Achieving Independence: The Challenge for the 21st Century

A Decade of Progress in Disability Policy Setting an Agenda for the Future

July 26, 1996

National Council on Disability1331 F Street NWSuite 1050Washington, DC 20004-1107

(202) 272-2004 Voice(202) 272-2074 TT(202) 272-2022 Fax

The views contained in this report do not necessarily represent those of the Administration, as this document has not been subjected to the A-19 Executive Branch review process.

LETTER OF TRANSMITTAL

July 26, 1996

The PresidentThe White HouseWashington, D.C. 20500

Dear Mr. President:

Today, as we commemorate the sixth anniversary of the signing of the Americans with Disabilities Act (ADA), I am pleased to submit to you the National Council on Disability's (NCD) report, Achieving Independence: the Challenge for the 21st Century. This is done in accordance with Section 401(b)(1) of the Rehabilitation Act of 1973, as amended.

In 1986, NCD published Toward Independence: An Assessment of Federal Laws and Programs Affecting People with Disabilities--With Legislative Recommendations. That report provided careful analysis and recommendations for improving federal laws and programs affecting people with disabilities. Toward Independence has had a profound impact on the way the country views people with disabilities and brought the need for equal opportunity to the fore. Most notably, ADA began as an NCD recommendation for a "comprehensive law requiring equal opportunity for individuals with disabilities."

Achieving Independence is not "government as usual." It calls for real change by and for real people. It is the result of recommendations developed by a diverse group of 300 participants at NCD's National Summit on Disability Policy, which took place in Dallas, April 27-29, 1996. At this historic gathering, people with disabilities representing the grassroots and national leaders alike, developed recommendations that build on two major accomplishments of the last decade--the passage of ADA and the empowerment of people with disabilities, both of which embody your people first principles of inclusion, independence, and empowerment.

In this era of social change, there is bipartisan support for increasing the role of the citizen in government. This report is a major step in that direction. NCD urges you to listen to the voices of democracy. For only in so doing, can this nation end its legacy of exclusion, dependence, and paternalism, and create an America which values and empowers all of its people.

The National Council on Disability (NCD) wishes to acknowledge and convey its sincere appreciation to the many individuals and organizations that contributed to this report. We thank everyone who participated in the National Summit on Disability Policy in Dallas. All participants are listed in Appendix C. Without you, this report would not have been possible. We particularly thank the facilitators of the policy working groups who volunteered their time to facilitate the groups and generously assisted in drafting and reviewing the report. They are Linda Toms-Barker, Policy Coordination; Gina McDonald, Civil Rights; Speed Davis, Education; Andy Imparato, Employment; Tony Young, Social Security and Other Income Maintenance; Peter Thomas, Health Insurance and Health Care; Alan Bergman, Long-Term Services; Deborah Kaplan, Technology; Chris Palames, Housing; Marilyn Golden, Transportation; and Bruce Curtis, International. We thank the federal partners who participated in the Summit, provided technical assistance and valuable background information, and reviewed this report. They are Liz Savage, U.S. Department of Justice; Michael Winter, U.S. Department of Transportation; Judith E. Heumann and Howard Moses, U.S. Department of Education (DOED); Bob Williams, U.S. Department of Health and Human Services; Susan Daniels and Marie Strahan, Social Security Administration; Bonnie Milstein and Betsy Julian, U.S. Department of Housing and Urban Development (HUD); John Lancaster, President's Committee on Employment of People with Disabilities (PCEPD); Andy Imparato, U.S. Equal Employment Opportunity Commission; Larry Roffee, U.S. Architectural and Transportation Barriers Compliance Board (the Access Board); Janet Looney, Office of Management and Budget; and Sylvia Walker, PCEPD.

We thank Jane West for drafting this report and Carolyn Osolinik of Mayer, Brown and Platt for generously volunteering her technical assistance in drafting the report. We are grateful to the many reviewers of the draft reports for their information, insights and suggestions. They are Robert S. Ardinger, Ardinger Consultants and Associates; Peter Blanck, University of Iowa; Dennis Cannon, the Access Board; Mary Lou Breslin, Disability Rights Education and Defense Fund (DREDF); Gerben DeJong, National Rehabilitation Hospital Research Center; Martha Ford, the Arc; Bob Griss, Center on Disability and Health; Bob Kafka, ADAPT (Americans for Disabled Attendant Programs Today); Cheryl Kent, HUD; Mitchell LaPlante, University of California at San Francisco; Ed Yelin, University of California at San Francisco; Maureen McCloskey, Paralyzed Veterans of American; Thea Spires; Rhonda Weiss, DOED; Robert Silverstein, Senate Subcommittee on Disability Policy; Patrisha Wright, DREDF; Warren Asher, Wilmer, Cutler and Pickering; Charlene Green, consultant; Margaret Chmielewski, Michigan State University; Douglas Martin, University of California at Los Angeles; Susan Webb, Arizona Bridge to Independent Living; Laura Rauscher, Massachusetts Department of Public Health; Rob Kilbury, Coalition of Citizens with Disabilities; Helen Roth, OPTIONS for Independence; Gregg Vanderheiden, University of Wisconsin; Margot Imdieke, Minnesota State Council on Developmental Disabilities; Susan Sygall, Mobility International; Gene Chalberg, University of Minnesota; and Mason Barney, Bowdoin College.

We thank Jacquie Sheehey, Patty Poston, Cindy Roman, Gloria Allen, and Lauren Eyster of MacFadden and Associates, Inc., who assisted NCD in developing the National Summit on Disability Policy. We thank the members of the advisory panel for the Summit, who assisted us in its development as well as reviewing this report: Nancy J. Bloch, National Association of the Deaf; Susanne Bruyere, Cornell University; Justin Dart; Bill Frey, Disability Research Systems, Inc.; Lex Frieden, Texas Institute for Rehabilitation and Research; David Pfeiffer, Suffolk University; Jim Tuscher, Paraquad and Jane West, consultant. We are grateful to the generous sponsors of the Summit: Amalgamated Transit Union; American Airlines; Brinker International; The Dole Foundation for People with Disabilities; Hewlett-Packard; Howard University Research and Training Center; JC Penney Company, Inc.; Kent Waldrep National Paralysis Foundation; McDonald's USA; Mayer, Brown and Platt; Pathways Awareness Foundation, and the Office of Special Education and Rehabilitative Services of DOED.

We are most grateful to our own NCD Public Policy Committee, who, under the energetic leadership of Audrey McCrimon, guided the development of the Summit and the report from beginning to end. Public Policy Committee members are John Kemp, Bonnie O'Day, Shirley Ryan, and Ela Yazzie-King. We thank Billie Jean Keith, who staffs the Committee.

We have an outdated system of public policy based on outdated attitudes toward people with disabilities.

Ed RobertsWorld Institute on Disability

In 1986, the National Council on Disability (NCD) issued Toward Independence, a report now considered a milestone in the history of disability policy. It set the agenda for the decade, proposing the enactment of the Americans with Disabilities Act (ADA). The adoption of this law in 1990 was certainly the watershed event for individuals with disabilities in the past decade.

Achieving Independence is a follow-up to Toward Independence. Fueled by the collective empowerment and self-determination of the disability community, it is proof of the impact of ADA. It offers an assessment of the nation's progress in achieving equal opportunity and empowerment in the last decade (1986-1996) and sets the agenda for the next decade by offering more than 120 recommendations for change.

A National Summit on Disability Policy

In keeping with the values of empowerment and consumer-directed policy making, NCD decided to convene a summit of people with disabilities to discuss how to achieve independence in the next decade. Over 1100 grassroots disability leaders from around the country were asked to complete nomination forms for participation in the summit. Three hundred participants were chosen on the basis of the following criteria: disability and cross-disability representation; geographic representation; ethnic, racial and other diversity; policy area expertise and breadth of knowledge in disability policy. Eleven policy areas were determined by NCD and the Summit Advisory Committee after a review of the topics addressed inToward Independence and the priorities reported by the President's Committee on Employment of People with Disabilities in Operation People First. These are the policy areas that are addressed in this report.

Politicians in both the Congress and the administration have increasingly called for "people first" government, for direct participation by Americans in decision making. There is less interest in hearing from intermediaries, such as professional advocates, and greater interest in hearing the views and ideas of Americans "outside the Beltway." The National Summit on Disability Policy provided a forum for just such views--it was an event at which knowledgeable people from around the country met to provide input directly into the federal policy-making process.

With the sense of undertaking a complex and potentially controversial challenge, NCD proceeded into this experiment in democracy. From April 27 through April 29, 1996, people from each of the 50 states and the District of Columbia gathered in Dallas. People with all types of disabilities were represented, as well as parents and family members. About 20 percent of the participants were minorities, including Native Americans, African Americans and Hispanic Americans. Participants were from disability organizations, service-providing organizations, academia, and federal, state, and local government. Federal officials provided technical assistance and background information. A special emphasis was placed on youth with disabilities. Twenty young people with disabilities, aged 13-22, participated fully, providing a glimpse of tomorrow's leadership and invigorating today's dialogue.

NCD chairperson Marca Bristo and disability rights leader Justin Dart opened the Summit, challenging participants to be both practical and visionary. Led by volunteer facilitators chosen from among the participants, Summit participants met in policy working groups for three days. The groups brainstormed about their policy areas, assessing the current state of affairs and debating how future policy could best promote the goal of independence.

The recommendations in this report were generated by these working groups and supplemented by suggestions from disability leaders who could not attend the Summit. Although the working groups' original recommendations were reviewed and amended by NCD, the recommendations presented here remain true to the deliberations of the people who attended the Summit and are thus reflective of the thinking of a cross-section of disability leaders and people with disabilities throughout the nation.

Summit participants had the opportunity to organize additional groups to discuss topics that they believed were not sufficiently addressed within the 11 policy areas defined by NCD and the Summit Advisory Committee. Discussions of nine of the "emerging issues" groups are summarized in Appendix B.

The experiment in Dallas proved to be a great success of democracy in action. The diversity of the men and women who participated--in terms of their disabilities, their ethnic/racial backgrounds, their geographic homes, their ages, and their viewpoints--was remarkable. To our knowledge, the only similar event that has occurred was the 1977 White House Conference on Handicapped Individuals, where people from around the country assembled in Washington to determine recommendations for disability policy. When provided with the opportunity to change policy, people with disabilities are effective and thoughtful analysts and contributors. NCD counts this event, in and of itself, as an important outcome of the Achieving Independence initiative.

Conclusions

NCD draws the following conclusions about the current state of disability policy as a result of dialogue at the Summit, internal deliberations and a review and analysis of current law and programs. These conclusions provide the basis for the recommendations in the report.

1. Disability policy has made steady progress in the last decade in empowering people with disabilities; however, this progress is threatened, compromised, and often undermined by lack of understanding and support in the Congress and among particular segments of society.

The enactment of ADA and many other laws in the last decade is evidence of considerable progress toward independence. The sense of empowerment experienced by people with disabilities is an important outcome of this policy progress. However, repeated attacks on the fundamental liberty and freedom of people with disabilities by those who do not understand the need for and the requirements of disability rights laws challenge the progress of the past decade. The media backlash against people with disabilities, fueled by special interest segments of society, is evidence of the residue of stereotypes about people with disabilities that remains pervasive in some quarters.

2. Most public policy affecting people with disabilities does not yet promote the goals of ADA--equality of opportunity, full participation, independent living, and economic self-sufficiency.

Public policy continues to send mixed messages to people with disabilities, on the one hand stating independence as a goal and on the other hand constructing significant obstacles to its achievement. The recommendations in this report are intended to change public policy so that it promotes the achievement of independence.

3. Most Americans with disabilities remain outside the economic and social mainstream of American life.

Despite notable progress in the last decade, people with disabilities continue to be less employed, less educated and poorer than other Americans. Barriers to the tools of economic empowerment remain significant. Minorities with disabilities are particularly disadvantaged by barriers unique to them because of their dual-minority status.

Overarching Themes of Recommendations

Most Americans will experience disability at some point during their lives, either themselves or within their families. Disability is not the experience of a minority of Americans. Rather, like aging, it is an experience that will touch every American family. Thus, creating an accessible and inclusive society is important for all of us.

When Americans with disabilities achieve independence, the benefits to society are compelling. People with disabilities want to be employed, educated, participating, tax-paying citizens living in the community and contributing to the economic and social fabric of American life. Federal funds should be an investment in those goals, an investment in independence, rather than a trap of dependence.

The recommendations provided in this report are offered in the context of balancing the national budget, with a priority on investment in human capital. In the long run, investments in the productivity and mainstream participation of people with disabilities are essential to achieving a balanced budget, a maximally productive society, and an America that is able to continue to provide economic leadership in an increasingly competitive world marketplace.

The following are overarching themes of the recommendations in this report.

1. Existing laws should be more vigorously enforced.

While they are aware of the dedicated commitment of officials and employees at federal enforcement agencies, virtually every policy working group at the Summit discussed the need for greater enforcement of existing law. The lack of adequate resources dedicated to enforcement limits the impact of disability laws. The Congress and the administration must commit additional resources to enforcement.

2. People with disabilities should direct policy and decision making when they are affected by the outcome.

As the Summit in Dallas demonstrated, people with disabilities are knowledgeable, effective decision makers. However, policies are frequently developed and carried out with little involvement of people with disabilities. Too often the outcome is that people with disabilities have little choice about the services, programs, supports or accommodations they may receive. Decisions have already been made for them. The empowerment of choice is a key to achieving independence.

3. Outreach and awareness campaigns must be launched to educate the public about the human and societal benefits of achieving independence for people with disabilities and the important role that civil rights and community-based supports play in promoting independence.

Most Americans do not understand the barriers faced by people with disabilities, the concept of disability rights or the need for disability rights laws. The backlash of the mid-1990s is evidence of this lack of understanding and widespread misinformation. Public understanding can prevent needless lawsuits and needless mistakes, such as the construction of buildings without access. Public support is critical to furthering the independence of people with disabilities.

4. Incentives for the inclusion of people with disabilities in all aspects of society must be further developed and implemented.

Disability policy must continue to open doors to full participation. While business, industry, state and local government, employers, and other sectors of society must meet their legal compliance obligations, they should also be provided with incentives to go beyond minimal compliance.

5. Principles of universal design should be universally applied.

Universal design involves developing and producing products that are usable by people with a wide range of functional capacity. Most families will experience disability in their lifetimes. Ensuring that technology, housing, transportation and other aspects of community life are designed to accommodate people with disabilities will ensure a more inclusive and productive society for all Americans.

6. Systems, services, and supports for people with disabilities must be further developed as a part of the mainstream of community life.

Too often people with disabilities face unnecessary barriers to full participation, such as employment, because the supports they need to fully participate are not available to them. Too often those supports are available only in segregated settings or for those who are not working. Community-based services and supports are critical to independence.

7. Accurate data about people with disabilities should be regularly collected, analyzed and reported.

Policy development and implementation are inhibited by a lack of statistical information about people with disabilities. Regular reporting of statistics, such as employment rates, will promote policy development, implementation and public understanding. Without such data, people with disabilities and policy makers are unable to accurately assess the nation's progress in meeting the goals of ADA and achieving independence for people with disabilities.

The Challenge for the Future

People with disabilities are well aware of the tools they need to achieve independence. Advances in policy, science and technology are available to support independence as never before. The challenge of achieving independence is a challenge of mustering the political will to move forward. Progress requires a dedicated commitment from all sectors of society--policy makers, people with disabilities and their allies, state and local government officials, nonprofit organizations, the private sector and the media. The achievement of independence for people with disabilities is a test of the very tenets of our democracy. It is a test we can pass.

INTRODUCTION

NCD undertook this examination and analysis with awareness that the world has changed significantly in the past decade--politically, socially and economically. Specifically, we note four trends that served as a context for reflections about the last decade in disability policy and discussions about the future disability policy agenda.

First, technology has evolved to such a point that the very nature of American life is changing. Americans increasingly exchange information and messages by E-mail; we surf the Internet for entertainment; we have conference calls by computer; we talk on cellular telephones from our cars; we balance our budgets and pay bills with computer programs. Computer literacy is becoming a basic skill for elementary school children. Card catalogs at public libraries are increasingly being replaced by on-line listings. The future promises expanded utilization of the information superhighway and the approaching obsolescence of routine hard-copy information exchange and communication.

Second, work has changed. Corporate trends of downsizing, merging and decreasing middle management have escalated. Job security is limited. Rarely does an individual stay with the same job, or career, for a lifetime. Benefits, such as health insurance and retirement plans, are of greater concern as job changing increases. People now expect to have several careers in a lifetime and must retrain to be prepared and remain marketable. Fewer jobs require physical labor and more require the provision of services. Self-employment is increasingly an option as technology minimizes geographical barriers. The workplace has become more flexible and more family-friendly as flextime, family and medical leave, and day care have become standard fare.

Third, the role of government is changing. Americans are frustrated with the ever-increasing federal deficit and its corollary--a large Federal Government. The current trend of a decreasing federal role and a concomitant increasing state role is likely to continue. The private sector may come to play a larger role in addressing problems that used to be the domain of government. The nature of government programs is increasingly being defined as one of "helping individuals to help themselves" with a wariness about the potential dependence that extended government support may engender and a hesitance to intrude in private sector decision making.

Fourth, our world has increasingly become a global community. No more are nations separated by geography and borders. Mass telecommunications, the development of a global economy, and increased interdependence bring the world's citizens closer together. Domestic developments have international ramifications. This is as true in the disability community as it is in other sectors of society.

It is in the context of these general societal trends that NCD embarked on an assessment of the progress made in the last decade in disability policy and agenda setting for the future. The goals of the Americans with Disabilities Act (ADA) and the principles of independent living provided the touchstones for our deliberations as we considered how they should guide disability policy into the next millennium.

While this report addresses all people with disabilities, it is important to point out some subgroups of the disability community who continue to be disenfranchised. Minorities with disabilities, including African Americans, Hispanic Americans, and Asian Americans, face dual discrimination and a unique set of barriers compounded by their membership in two minority groups. Likewise, women with disabilities face dual barriers.

Native Americans with disabilities and Indian tribes sometimes are not covered by the laws and programs described in this report or are covered in part. Since tribal governments are separate government entities, the application of federal law to Indian tribes is unique and often unclear. For example, the extent to which ADA applies to Indian tribes is still being determined.

Some disabilities are less acknowledged and less understood than others. For example, people with multiple chemical sensitivities have a particularly difficult time securing recognition for their disability. Most people do not understand the chemical and environmental barriers that preclude such persons' access to the most basic and essential areas of life, such as housing and education.

NCD intends this report to address all people with disabilities, no matter what their disabilities or their other characteristics. People with disabilities are a diverse group of Americans with as diverse a set of needs as any other group of Americans. The common experience of disability is what defines us for the purposes of this report.

This report is organized in the following manner. Two background sections--Disability Demographics and Independent Living, Disability Rights and Disability Culture--begin the report to provide a context for the policy discussion and recommendations that follow. Eleven discrete policy areas are then addressed, providing an overview of progress in the last decade, current issues, a list of significant relevant legislation enacted in the last decade, and recommendations for the future. The report is intended to provide a summary of each policy area rather than a comprehensive analysis. Appendix A provides recommendations made by participants at the National Summit on Disability Policy to NCD for NCD activities and initiatives. A summary of discussions held about emerging issues at the Summit appears in Appendix B. Other appendices list Summit participants, give the text of remarks made by Marca Bristo and Justin Dart at the Summit, and provide a description of NCD.

This report will reveal that while much progress has been made in disability policy in the last decade, much remains to be done to shape public policy so that it promotes the achievement of independence for people with disabilities.

DISABILITY DEMOGRAPHICS

Disability used to signal the end of active life. Now it is a common characteristic of a normal lifespan. Sooner or later it will occur in the lives of most people, surely in the life of every family.

Justin Dart"Fallacy and Truth About the ADA"The Washington Post, July 18, 1995

Similarly deceptive is the now-popular figure of "43 million people with a disability"...for it implies that there are over 200 million Americans without a disability. We in the independent living/disability rights movement have coined the term TABS--Temporarily Able-Bodied. But the metaphor of being but a banana-peel slip away from disability is inappropriate. The issue of disability for individuals...is not whether but when, not so much which one but how many and in what combination.

Irving K. Zola"Disability Statistics, What We Count and What It Tells Us"Journal of Disability Policy Studies,Vol. 4, No. 2, 1993

Disability, like aging, is increasingly an artifact of American society. Advances in public health, medical treatment, and technology enable people to live longer lives. The longer one lives, the more likely one is to develop a disability. Premature infants who once would have died at birth now live. People injured in car accidents, diving accidents, and war now survive, when once they would have died. The increasing presence of people with disabilities in society, like the increasing proportion of elderly people in society, is a testament to the success of modern science.

As a group, people with disabilities are older, poorer, less educated and less employed than people without disabilities. The most widely accepted estimate of the number of people with disabilities is 49 million non-institutionalized Americans (McNeil 1993). As such, people with disabilities constitute the single largest minority group identified in the United States, surpassing the elderly (about 33.2 million) and African Americans (about 32.7 million) (Bureau of the Census 1995).

Data from the 1990 Census indicate that about 2.3 million residents of institutions have disabilities, most of these residing in nursing homes. Others live in mental hospitals, correctional institutions and mental retardation facilities. Mental disability is the most frequent impairment cited among those living in institutions (LaPlante 1991). In the last decade, the number of people with disabilities who are homeless has increased, particularly those with mental disabilities.

The percentage of people with a disability increases with age. While 5 percent of the population less than age 18 has a disability, 84.2 percent of those age 85 and over have a disability. Of those age 18-44, 13.6 percent have a disability, while of those age 45-64, 29.2 percent have a disability (McNeil 1993). As the baby boom generation advances in age, the number of people with disabilities will likewise increase.

There are differences in the prevalence of severe disability among races, ethnicity groups and sexes. For the population aged 15-64, 7.4 percent of Whites had severe disabilities, compared to 12.7 percent of African Americans, 11.7 percent of American Indians, Eskimos or Aleuts, 9.1 percent of those from Hispanic origin and 4.5 percent of Asian or Pacific Islanders. Males had a disability rate of 18.7 percent and a severe disability rate of 8.1 percent. For females, the corresponding rates were 20.2 percent and 11 percent (McNeil 1993).

Education

People with disabilities have a lower level of educational attainment than people without disabilities. While improvements in the last decade have been documented, a gap between people with and without disabilities remains in terms of both high school and college graduation. For example, only 14 percent of people without disabilities, but 34 percent of people with disabilities, have less than a high school education (Yelin 1996).

The dropout rate for high school students with disabilities decreased from 27.4 percent to 22.4 percent between 1986-87 and 1991-92. Between 1984-85 and 1991-92, the percentage of students with disabilities completing high school rose from 55 percent to 64 percent (U.S. Department of Education [DOED] 1994).

Few students with disabilities go on to postsecondary school; however, the number is increasing. One study found that when students with disabilities had been out of high school 3 to 5 years, fewer than one-third had enrolled in postsecondary education programs, less than half the rate of youth in general (DOED 1993). However, in 1991 almost 9 percent of college freshmen were students with disabilities, whereas in 1978 less than 3 percent were students with disabilities (DOED 1995a).

Among people with disabilities, minorities are less educated than non-minorities. For example, while 30.7 percent of Whites with disabilities have less than a high school education, 43.3 percent of minorities have less than a high school education (Yelin 1996).

Income Status

People with disabilities are poorer than people without disabilities. In January 1995, 30 percent of people with work disabilities had incomes below the poverty level, compared with 10.2 percent of the working-age population without work disabilities. Of those with severe work disabilities, 35.8 percent had incomes below the poverty level (LaPlante et al. 1996).

While the average family income for all families in 1995 was $46,478, it was only $28,067 for families of people with disabilities. Among families with disabilities, those who were White had an average family income of $30,216, while those who were minorities had an average family income of $20,587 (Yelin 1996).

Employment

People with disabilities are twice as likely as people without disabilities to be unemployed. In 1995, 10.1 percent of the population aged 16-64, or 16.9 million people, had a work disability. Of these, 11.4 million had a severe work limitation and were not participating in the labor force, with a cost to society of about $150 billion (LaPlante 1995). People with disabilities who are minorities are less likely to be employed than people with disabilities who are not minorities.

Among people with disabilities, those who are minorities are less likely to be working than those who are White. While 31.2 percent of Whites with disabilities were employed in 1995, only 19 percent of non-Whites were working (Yelin 1996).

According to polls of 1000 people with disabilities taken in 1986 and again in 1994, there was virtually no change in the proportion of people with disabilities who are working. Both polls found about two-thirds of working-age people with disabilities not working. Somewhat fewer adults with disabilities were working full-time in 1994 (20 percent) than in 1986 (24 percent) (Lou Harris and Associates 1986, 1994). This lack of increase in the employment rate of people with disabilities persists despite an increase in their overall education level.

Note: As this report went to press, the President's Committee on Employment of People with Disabilities notified NCD that it would soon release new employment figures for people with disabilities that are more encouraging than the information cited above. These figures are based on a new survey by the Census Bureau.

INDEPENDENT LIVING, DISABILITY RIGHTS AND DISABILITY CULTURE

In its broadest implications, the independent living movement is the civil rights movement of millions of Americans with disabilities. It is the wave of protest against segregation and discrimination and an affirmation of the right and ability of persons with disabilities to share fully in the responsibilities and joys of our society.

Ed Roberts1977

The dignity of risk is the heart of the independent living movement. Without the possibility of failure, the disabled person lacks true independence and the ultimate mark of humanity, the right to choose.

Gerben DeJong1983

The key force behind a rethinking of policy toward persons with disabilities has been the independent living movement.

Judith E. Heumann"Building Our Own Boats"1993

For generations, society has viewed people with disabilities as citizens in need of charity. Through ignorance we tolerated discrimination and succumbed to fear and prejudice. But our paternalistic approach did no more to improve the lives of people with disabilities than labor laws restricting women in the workplace did to protect women. Today we are shedding these condescending and suffocating attitudes--and widening the door of opportunity for people with disabilities....People with disabilities are here today to remind us that equal justice under the law is not a privilege but a fundamental birthright in America.

Senator Ted Kennedy, during the Senate's passage of ADAJuly 13, 1990

America's mission was and still is to take diversity and mold it into a cohesive and coherent whole that would espouse virtues and values essential to the maintenance of civil order. There is nothing easy about that mission. But it is not Mission Impossible.

Former Representative Barbara Jordan1993

A hallmark of the past decade has been the growth of the disability rights movement and the independent living philosophy. Just as civil rights movements for African Americans and women propelled political, social and legal changes in society, so too has the disability rights movement.

During the 1960s and 1970s people with disabilities began to organize themselves to gain greater access to society and to challenge widely held stereotypic beliefs and attitudes about them. Influenced by the antiwar movement of the 1960s, the Black civil rights movement of the 1960s and the feminist movement of the 1970s, disability leaders began to articulate an agenda and engage in activities to promote their civil rights. Although there is no one defining event marking the birth of the independent living movement, the determination of a group of students with disabilities to attend the University of California at Berkeley in the 1960s is often considered the pivotal effort that began the disability rights movement. Those students were led by Ed Roberts, at the time a young man with significant disabilities who was determined to go to college (Shapiro 1993).

Other people with disabilities began organizing groups around the nation. For example, in 1971, Judith E. Heumann formed a group called Disabled in Action to advocate for disability rights in New York. Grassroots organizations in communities around the country organized to seek community-based services that supported their independence in lieu of institutions and services that fostered dependence. In Washington, a national coalition--the American Coalition of Citizens with Disabilities--was formed to monitor and influence legislation.

Independent Living Philosophy and Services

The three cornerstones of the independent living philosophy are consumer sovereignty, self-reliance, and political and economic rights. The philosophy rejects the supremacy of professionals as decision makers and views disability as an interaction with the society and the environment rather than as a medical condition or physical or mental impairment (DeJong 1979). Essential features of the independent living service model include consumer control, a cross-disability emphasis (inclusion of people with all types of disabilities--mental, physical, sensory), a community-based and community-responsive approach, peer role modeling, provision of a wide range of services, a community advocacy orientation and open and ongoing access to services (Lachat 1988).

Beginning in 1978, funding for independent living services was authorized through Title VII of the Rehabilitation Act. These funds were authorized to promote the development of service programs operated by and for people with disabilities. In 1979, 10 independent living center were funded throughout the country. Today there are over 200 centers throughout the states, providing information and referral services, peer counseling, independent living skills training, and individual and systems advocacy (Smith, Frieden and Richards 1995).

The Disability Rights Perspective

The disability rights perspective views people with disabilities as a minority group that has been subject to discrimination and unfair treatment--in legal terms, a class of people. It stands in contrast to a charitable perspectives which views people with disabilities as unfortunate and deserving of pity and care. Likewise, it stands in contrast to a medical model, which views people with disabilities as needing to be "cured." It also stands in contrast to a rehabilitation perspective, which views people with disabilities as needing experts and professionals who can provide services to enhance the functioning of the individual. During the 1980s, the disability rights perspective has become the dominant perspective adopted by leaders of the disability community and reflected in their approach to public policy. One commentator has described the evolution of regard for people with disabilities as moving from "caste to class" (Disability Rights and Education Defense Fund 1981).

The tenets of other civil rights perspectives apply to the disability rights perspective. The defining aspect of the perspective is that people with disabilities, as a group, have been subject to pervasive and persistent discriminatory treatment. The remedy for such treatment is a prohibition against discrimination, protection of civil rights, and heightened empowerment of people with disabilities. Beginning with the passage of Section 504 of the Rehabilitation Act of 1973, people with disabilities were acknowledged by the Congress as a class of people subject to pervasive discrimination. The Americans with Disabilities Act (ADA) affirmed this view. Disability policy has increasingly acknowledged that--like race, ethnicity, gender, and age--disability is a characteristic that invites discrimination.

The notion of disability rights is a relatively new concept, yet to be widely understood by the public. While people generally acknowledge racism and sexism as realities to be challenged, discrimination against people with disabilities often goes unperceived. Furthermore, paternalistic acts and attitudes toward people with disabilities are often expected and accepted, when in fact they are acts and attitudes of discrimination and should be so labeled.

Many organizations have evolved over the last couple of decades to promote and defend the rights of people with disabilities such as the Disability Rights Education and Defense Fund, Americans for Disabled Attendant Programs Today, the National Council on Independent Living, the National Association of Protection and Advocacy Systems, the National Parent Network on Disabilities and the Consortium for Citizens with Disabilities, which is based in Washington and comprises over 100 national organizations.

The Disability Vote

With 35 million voting-age Americans, the disability community constitutes a significant voting bloc. The impression of the disability community as a silent and overlooked minority, a "sleeping giant," is changing. Data from a study of the 1988 presidential election strongly suggest that George Bush gained votes among voters with disabilities because of his outreach efforts. It is likely that the disability vote helped win the election for President Bush (National Organization on Disability 1996). Disability rights advocates are currently working aggressively within both major political parties to attract the disability vote for the next presidential election. Efforts are under way within the disability community to register people with disabilities to vote.

Disability Culture

The past decade has witnessed the evolution of the notion of what some have described as disability culture, a corollary to the self-identification of people with disabilities as a minority group. As people with disabilities have increasingly come to identify with each other, and to express themselves artistically through graphic arts, performing arts and participation in the cultural life of society as a whole, they have increasingly identified their own cultural affiliation, which, as with other minority groups, may mitigate the effects of social devaluation. A function of disability culture is a celebration of the uniqueness of disability and a sense of belonging in a world that is often rejecting. Key aspects of disability culture have been identified as unique communication, disability humor, a sense of shared history in society, evolving language and symbols, a common worldview, and shared strategies for surviving and thriving (Gill 1995).

Disability Studies

As the disability community has grown, its researchers and academics have sought to develop a home in academia. In much the same way that the civil rights movement for African Americans generated departments of African American studies and the feminist movement generated departments of women's studies, the disability community has promoted the notion of developing disability studies as a discrete area of academic inquiry. The field of disability studies, described as the study of the lived cultures and experiences of individuals with disabilities, is in its early stages of development.

ASSESSMENT OF DISABILITY POLICY

Policy Coordination

We must forge a national disability policy that is based on three simple creeds--inclusion, not exclusion; independence, not dependence; and empowerment, not paternalism.

President Bill Clinton1996

...an exclusively special needs approach to disability is inevitably a short-run approach. What we need are more universal policies that recognize that the entire population is "at risk" for the concomitants of chronic illness and disability....Without such a perspective we will further create and perpetuate a segregated, separate but unequal society--a society inappropriate to a larger and older "changing needs" population.

Irving K. Zola"Universalizing a Disability Policy"1989

The Americans with Disabilities Act (ADA) is the most comprehensive policy statement ever made in American law about how the nation should address individuals with disabilities. Built on the principles of equal opportunity, full participation, independent living and economic self-sufficiency, the law reflects the disability community's convictions and determination to participate as first class American citizens and to direct their own futures.

Yet little progress has been made in ensuring that the various federal programs for people with disabilities are grounded in the principles of ADA. People with disabilities receive conflicting messages from national disability policy. While national policy promotes employment, national policy does not ensure access to health insurance unless an individual with a disability is not working. While full participation in the community is a national goal, many people with disabilities can receive the support services they need only if they live in segregated settings. While the Federal Government spends about $175 billion per year on people with disabilities, most of this amount continues to support dependence rather than independence. Decisions about the services people with disabilities will receive continue to remain largely in the hands of service providers, rather than people with disabilities.

Progress in ensuring that people with disabilities are considered and included in generic policy areas has begun. For example, there has been a concerted effort to ensure that the National Information Infrastructure will be accessible to and usable by people with disabilities. President Clinton's AmeriCorps program explicitly included people with disabilities as both volunteers and recipients of volunteer services. Yet national employment and labor policy, as well as foreign policy, have done little to acknowledge people with disabilities.

The Federal Level

There are multiple federal programs for people with disabilities, administered by different federal agencies. The programs differ in their eligibility criteria and foci, depending on their purposes and their target populations. The largest federal disability programs are Social Security and Medicaid/Medicare.

Disability programs are distributed through a number of committees and subcommittees in Congress that rarely consult with each other during policy development. For example, in the Senate the $63 billion Social Security programs and the $43 billion Medicaid and Medicare programs are under the jurisdiction of the Committee on Finance. The Subcommittee on Disability Policy of the Committee on Labor and Human Resources has jurisdiction over vocational rehabilitation, special education and ADA. Yet there is no mechanism for these committees to jointly address the conflicts or promote coordination of the disability policies under their respective jurisdictions.

The current climate in Washington is one of consolidation, downsizing, block grants and performance partnerships. Legislation intended to consolidate vocational rehabilitation with other federal employment programs was introduced and almost enacted in 1995. Congress is considering transforming the Medicaid entitlement into a state block grant.

While consolidation offers increased flexibility in service delivery, it also brings the risk of loss of services altogether as potential recipient groups are left to battle for a fair share at the state level. Many people with disabilities believe they may lose funding and services under state block grants, as they are often put in a position of competing with other groups who have historically been more successful in staking their claims at the state level.

The State Level

Much of the consolidation impetus has been generated by states that are frustrated trying to implement so many federal programs with disparate requirements. State programs generally reflect the categorical nature and complexity of programs at the federal level. There is no single point of entry or access point for people with disabilities to receive information or services.

A number of states have attempted to address these problems by consolidating programs at the state level. The state of Wisconsin developed a county-administered program, the Community Options Program, designed and funded to divert and relocate people with significant disabilities from institutions. The state of Oregon enacted legislation authorizing the state to set up a comprehensive health and social service system for people with disabilities.

A recent report examined the states' experiences in administering disability programs and recommended the consideration of consolidation at the federal level with a strong consumer and community focus. A set of consumer-centered values was recommended to drive reform with a common intake process and a consumer-centered individualized plan for each customer who receives services under the consolidated system (Scully, Snow and Riley 1995).

The Customer's Perspective

The customer with disabilities seeking services faces a maze of programs, requirements and bureaucratic obstacles. Separate intake systems and eligibility determination processes are frustrating and wearing. Furthermore, even after being determined to be eligible by an agency or service provider, the customer is empowered with little leverage to participate in decisionmaking about the services she or he will receive. Duplication and conflict are commonplace. A customer in one state was reported to have 12 different case managers (Scully, Snow and Riley 1995).

Waiting lists are another common problem. Rarely do states provide services to all eligible recipients in any service area. For example, state vocational rehabilitation agencies now use an order-of-selection process because the demand for their services is so much greater than their resources. Lack of adequate resources is usually the explanation for waiting lists.

Data Collection

Lack of detailed and current data about people with disabilities remains an obstacle to effective policy development and analysis. Major national surveys do not routinely collect or report data about people with disabilities the way they collect and report data about other protected groups, such as women, the elderly, and racial and ethnic minorities. Disability statistics lag well behind many areas of health and social statistics. There is neither a national survey that regularly gathers information about the nation's population with disabilities nor an agreed-upon definition of disability. Data about people with disabilities are often gathered from survey questions that were not intended for this purpose. Survey questions often reflect a medical orientation to disability rather than an independent living orientation. The major national surveys used are the National Health Interview Survey (NHIS), the Survey of Income and Program Participation and the Current Population Survey.

There has been considerable discussion in the last decade about the limitations of these databases and the need for a database specifically designed to answer policy- relevant questions about people with disabilities. One outcome of this discussion has been the creation of the most comprehensive national survey on disability ever undertaken in this country--the 1994/1995 Disability Survey, a supplement to the NHIS. Questions for this survey were extensively reviewed by the federal disability community, advocacy groups, and academics. In addition, the questionnaire was voluntarily tested by people with disabilities and their families. It is intended to address key policy questions, including why employment among people with disabilities is so low and why the Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) rolls have experienced so much growth. Survey results should be released in 1997.

There are currently no plans to repeat this survey later. It is scheduled as a one-time, snapshot event; thus it does not appear to be a vehicle for examining trends over time in employment, income, and other areas important to monitoring the status of people with disabilities.

Little improvement in data collection about people with disabilities has been evident in the last decade. The limited availability of data about people with disabilities continues to thwart policy analysis and promote an "out of sight, out of mind" viewpoint.

Recommendations

During the last decade, public policy discussions have increasingly focused on enhancing the consistency and coordination of programs and policies for people with disabilities. Even though discrepancies and conflicting purposes remain the rule rather than the exception, efforts are under way at both federal and state levels to bring consistency and coordination to benefits and services. However, the goals established by ADA do not yet drive policies that affect people with disabilities, nor are they used to drive budget and spending priorities and allocations. In most states, people with disabilities seeking services from the many service systems are still too often frustrated by the maze they must negotiate to try to meet their needs.

Goals of ADA

1. All federal agencies involved with policies or programs that affect people with disabilities should ensure that such policies and programs promote the goals of ADA. In cases where there is conflict, changes should be initiated, including drafting legislative proposals if required.

All policies and programs should support empowerment, independence, economic self-sufficiency, full participation and equal opportunity. Many programs and policies continue to present obstacles to the achievement of these goals rather than creating opportunities.

Coordination and Collaboration

2. The Federal Government and the Congress should develop mechanisms to ensure consistency, collaboration and coordination among federal agencies that administer policies that affect people with disabilities and among Congressional committees with jurisdiction over policies and programs that affect people with disabilities.

The goal of such mechanisms should be to ensure that programs and policies interact in such a manner as to promote independence for people with disabilities rather than to create obstacles. Such mechanisms, which may be interagency committees in the case of the Federal Government, should also work to avoid duplication and to maximize use of existing resources.

3. Federal agencies should work to reduce the redundancy and duplication imposed upon people with disabilities when they are seeking to participate or are participating in programs or services and should seek to maximize customer satisfaction with entry into, participation in, and exit from programs and services.

The Federal Role

4. If the Federal Government grants greater authority to states, it must retain responsibility and authority for ensuring rights and protections; standards for eligibility for supports, benefits, and services; and meaningful outcomes for people with disabilities.

Full Participation in the Community

5. Congress should revise federal laws and agencies should revise regulations (and require or encourage states to do the same) to ensure that all supports and services are provided to all people with disabilities in the most inclusive setting. Revisions should foster independence and interdependence rather than dependence. A national clearinghouse of successful approaches should be established and supported.

Consumer Control

6. Congress and the President should ensure that people with disabilities are significantly involved in the development, direction and implementation of policies that affect them.

Policy development continues to take place without the participation and involvement of people with disabilities. Sometimes people with disabilities are involved in a minor or token fashion. People with disabilities must play the central role in directing policy that is critical to their empowerment.

7. Congress, in consultation with NCD, should a) establish a policy that people with disabilities and their families will control resources necessary to obtain services and supports of their choice and b) hold states accountable for implementing this policy.

Such a policy should include the provision of guidance and support in assisting people with disabilities and their families in making informed choices. Self-advocacy training, focusing on skills, should be authorized. The customer service principle so common in the private sector, with a focus on customer satisfaction, should be paramount. Marketing and outreach strategies should be used to inform potential consumers of the services and supports that are available.

Equity

8. Congress and the administration should establish equitable policies that address the needs of all people with disabilities (including appropriating funds as needed to include those with emerging disabilities and recently recognized disabilities) regardless of disability diagnosis or label, age, gender, ethnic/cultural background, religion, familial status or sexual orientation.

Outreach to those who are often underrepresented is critical to ensure equitable access for all people with disabilities, no matter what their disability and no matter what their race, ethnicity, or other characteristics.

Functional Need, Not Diagnosis or Label

9. Congress and the administration should base policies and services for people with disabilities on needs rather than on disability categories or labels.

The needs of people with disabilities change over time and are a function of the interaction between disability-related limitations and environmental factors. Some supports and services should be made available regardless of personal resources while others might be means tested. Individuals should not be required to impoverish themselves to have access to publicly funded supports.

Accountability

10. All federal and state government agencies should ensure that all of their communications are available in accessible formats and that they portray people with disabilities in a manner that is consistent with the empowerment and inclusion goals of ADA.

Data Collection and Analysis

11. The administration should ensure that all federal statistical activities that include data collection and reporting for other groups, such as minorities and women, include the category of people with disabilities, using a definition based on ADA.

Federal agencies that sponsor research and data collection that affect people with disabilities should reevaluate the economic assumptions that are implied in typical cost-benefit analysis in light of the new disability paradigm embodied by ADA. The Federal Government should review existing surveys that have questions related to disability and update those questions so that they reflect the paradigm of disability embodied in ADA. All federal agencies conducting surveys should ensure that people with disabilities are the respondents, rather than using proxies. This will require alternate formats, adaptation of telephone surveys for people with cognitive impairments, training of surveyors in how to interview people with particular needs, etc.

12. The Federal Government should design and carry out a recurring longitudinal study (with a design comparable to that of the Survey of Income and Program Participation) that routinely collects and reports data that are relevant to the goals of ADA and the disability community.

The Federal Government should sponsor methodological analysis and development that will develop new measures and survey questions appropriate to the new paradigm of disability as reflected in ADA.

13. The Federal Government and the Congress should ensure that questions about disability are adequately included in the 2000 census.

14. All federal agencies should promote further analysis of existing data related to people with disabilities, particularly data from the 1994-95 Disability Supplement to the National Health Interview Survey.

Tribal Governments and Indigenous Peoples

15. Federal and state governments should invest resources in working with tribal governments and indigenous people with disabilities to ensure that all policies affecting people with disabilities are culturally appropriate and extend beyond the federal or state government to include tribal governments.

Many federal policies, such as ADA, were not developed in conjunction with tribal governments; thus their applicability to indigenous people and tribal governments is still being delineated. In the future, Congress and federal and state governments should work together to ensure appropriate applicability of disability laws to tribal governments and Native Americans.

Civil Rights

Discrimination occurs in every facet of our lives. There is not a disabled American alive today who has not experienced some form of discrimination. Of course, this has very serious consequences. It destroys healthy self-concepts and slowly erodes the human spirit.

I. King JordanPresident, Gallaudet University1989

As a former mental patient (who now prefers to use the term psychiatric survivor) who has been active for many years in the movement to develop self-help and empowerment, I have seen the crippling effect that stigma has on people who carry the mental illness label....Indeed, this prejudice may be the most powerful barrier that persons with psychiatric labels face, keeping us out of the mainstream in the same way that the lack of ramps hampers people in wheelchairs from fully participating in community life.

Judi Chamberlin"Psychiatric Disabilities and the ADA"1993

Today's legislation brings us closer to that day when no Americans will ever again be deprived of their basic guarantee of life, liberty and the pursuit of happiness....This historic act is the world's first comprehensive declaration of equality for people with disabilities.

President George BushStatement at the signing ceremony for ADAJuly 26, 1990

America is reaping the benefits of a more inclusive society. Employers have a larger pool of qualified workers. Businesses are opening doors to new customers. State and local governments are enjoying broader citizen participation. Most important, individuals are being judged not by their disabilities, but by their abilities.

President Bill ClintonJuly 18, 1995

ADA has made me feel like a real American!

Gregory DouganVoices of FreedomNational Council on Disability1995

Throughout history, people with disabilities have been subject to prejudice, stereotyping and discrimination (Mayerson 1982; DREDF 1981). Beliefs about the inferiority of people with disabilities have offered justification for their subordination in the same way that erroneous but widely held beliefs resulted in the oppression of women and African Americans. Disability policy, like policy for other oppressed groups, has both guided and reflected changes in attitudes over time. Over the last century disability policy has evolved from an orientation of care and charity to an orientation of medical treatment and rehabilitation to its current orientation of empowerment and civil rights. The growth and determination of the disability rights movement, like those of other civil rights movements, have generated numerous civil rights laws over the last 25 years, beginning with Section 504 of the Rehabilitation Act of 1973 prohibiting discrimination against people with disabilities when federal funds are involved. Other legislation built on this foundation to expand the antidiscrimination mandate--the Voting Accessibility for the Elderly and Handicapped Act of 1984, the Air Carriers Access Act of 1986, the Fair Housing Amendments Act of 1988, and the most comprehensive civil rights legislation to date for people with disabilities, ADA.

The Americans with Disabilities Act

People with disabilities are now protected by comprehensive antidiscrimination legislation comparable to that for women, racial and ethnic minorities and the elderly. Modeled after the Civil Rights Act of 1964, ADA has contributed significantly to equal opportunity for people with disabilities. With a legal prohibition against discrimination and enforceable sanctions established, people with disabilities have begun to experience the empowerment of first-class American citizenship and the benefits of full participation. Enactment of ADA was the key recommendation made by NCD in its landmark report of 1986, Toward Independence.

The benefits of ADA have been documented in detail elsewhere (Blanck 1994a, 1994b, 1996; Gostin and Beyer 1993; NCD 1995; U.S. General Accounting Office 1994; West 1991, 1996a, 1996b). People with disabilities have experienced increased access to many environments and services, including town halls, public libraries, child care centers, courthouses, retail stores, restaurants, hotels, parks, 911 emergency services, university programs and telecommunications services. Employment opportunities have increased with the provision of reasonable accommodations. Students with learning disabilities can receive additional time to take the SAT. Applicants with visual impairments can take the bar exam in large-print versions. People who are blind or deaf can serve as jurors. People with mobility impairments are traveling independently, some after years of staying at home being imprisoned by the lack of access to the environment and society.

People with disabilities feel differently about themselves as a result of ADA. They are empowered and more confident in approaching employers or entering public places. They are traveling places they have never been before, shopqing in stores they never had access to, and attending dramatic arts and musical performances at theaters that used to exclude them. They are experiencing the pride of independence and the satisfaction of full participation.

Following the passage of ADA, people with disabilities have increasingly come to identify themselves as a minority group and to be identified as a minority group in public policy. The Harris polls of people with disabilities revealed a 14 percent increase in the number of individuals feeling a sense of common identity with other people with disabilities between 1986 and 1994 (Lou Harris and Associates 1986, 1994). The last decade has also witnessed a broadening of the disability community. People with HIV and AIDS now identify with the disability community. The presence of people with mental illness advocating for themselves has grown notably.

ADA is creating positive changes in American society and culture, enhancing the national tradition of celebrating diversity among our citizens. Notions of accessibility, accommodation and universal design are increasingly becoming a part of how America does business. People without disabilities can look forward to a more accessible society as they age. Businesses have reported unexpected positive impacts as they have expanded their markets and tapped new employee pools.

Programs and Services Supporting Civil Rights for People with Disabilities

Key federal programs that advocate for and protect the rights of people with disabilities have grown steadily over the last decade. The Protection and Advocacy Systems and their affiliate programs (Client Assistance Programs, Protection and Advocacy for Individuals with Mental Illness, Protection and Advocacy for Individual Rights, Protection and Advocacy for Technology) are active in every state serving over 600,000 individuals annually. Centers for Independent Living are also active in every state promoting effective implementation of the law. In addition, there has been an increase in participation in disability rights litigation by members of the private bar and legal services organizations. State and local laws and ordinances barring discrimination on the basis of disability have facilitated compliance with ADA.

The Federal Government has supported the provision of technical assistance to both entities covered by ADA and people with disabilities whose rights are protected by the law. Technical assistance centers in every region of the country, called Disability and Business Technical Assistance Centers, answer questions, provide training and develop and disseminate materials.

Ongoing Discrimination

Despite the remarkable progress in civil rights, people with disabilities still encounter discrimination frequently, and access cannot be taken for granted. Between July 26, 1992, and March 31, 1996, 63,000 employment discrimination complaints were filed with the Equal Opportunity Commission. Discrimination complaints have been filed by people with disabilities in virtually all areas covered by ADA, including education, transportation, state and local government services, public accommodations and telecommunications. In 1994, 30 percent of working-age people with disabilities indicated they had encountered job discrimination, up 5 percent from 1986 (Lou Harris and Associates 1994). People with disabilities continue to report obstacles in housing, transportation, education and access to public accommodations. People who are deaf and hard of hearing cite ongoing communication access barriers.

While ADA has had some impact on the provision of health insurance, its comprehensive antidiscrimination mandate does not address many health insurance practices. Preexisting-condition exclusions, underwriting practices, and caps on benefits continue to negatively affect people with disabilities and disadvantage them in both access to health care and access to private health insurance policies. In addition, people who are deaf have noted considerable difficulty in gaining communication access to health care providers through the provision of sign language interpreters.

People who are perceived to be "mentally ill" are frequently subject to legal interventions applied only to them on the basis of the label of "mental illness." Such interventions would not be tolerated if applied to people without the label of mental illness. Such interventions include forced treatment, involuntary commitment, forced or coerced medication and substantial limitations on personal freedom imposed by the judicial system.

Federal Enforcement

Every relevant agency of the Federal Government has initiated activities to implement ADA in good faith and in keeping with the spirit of the law. However, the Federal Government has yet to use its full authority to enforce the law. Both Republican and Democratic administrations have requested additional funds from the Congress for ADA enforcement, yet such funds have not been forthcoming. Without the infusion of additional resources, federal agencies will remain unable to use their full authority to enforce the law. With a 20 percent increase in workload resulting from the enactment of ADA, the Equal Employment Opportunity Commission (EEOC) is slow in processing complaints. The Department of Justice (DOJ) is not investigating all the complaints it receives and the Department of Transportation (DOT) is unable to track the complaints it receives (West 1995). People with disabilities have repeatedly urged the Federal Government to play a stronger role in enforcement (NCD 1994; PCEPD 1994).

Despite the technical assistance provided by the Federal Government, many covered entities and people with disabilities are unaware of the requirements of the law. For example, a 1994 survey found that only 40 percent of people with disabilities were aware of the law (Lou Harris and Associates 1994). Outreach to small businesses and people from ethnic and racial minorities with disabilities is lacking (West 1994).

The Backlash

Just as other disenfranchised groups have experienced backlashes against their efforts to empower themselves, so too have people with disabilities. Although some in the media have taken the time to understand the issues and provide fair and balanced coverage, unfortunately, too often the media have highlighted "fringe" ADA cases and characterized ADA as an example of government overregulation. People with disabilities have often been portrayed as malingerers, using ADA as a mechanism to avoid responsibility. People with disabilities see ADA as a ticket into the workforce, into the marketplace and into the community, not as a route to avoid responsibility. This basic message is rarely communicated by the press.

Key Legislation in the Past Decade

The Voting Accessibility for the Elderly and Handicapped Act of 1984 (P.L. 98-435) requires that registration and polling places for federal elections be accessible to people with disabilities.

The Air Carriers Access Act of 1986 (P.L. 99-435) prohibits discrimination against persons with disabilities by all air carriers.

The Handicapped Children's Protection Act of 1986 (P.L. 99-372) overturned a Supreme Court decision and clarified that courts may award attorneys' fees to parents who prevail in administrative or judicial proceedings brought under the Individuals with Disabilities Education Act (IDEA). Awards under IDEA were authorized so that they are parallel to those authorized under other civil rights laws.

The Civil Rights Restoration Act of 1987 P.L. 100-259) amended Section 504 and other antidiscrimination laws to overturn the Supreme Court Grove City College v. Bell decision, clarifying that the phrase "program or activity" was intended to apply to an entire institution of which any component or part was receiving federal funds.

The Protection and Advocacy for Individuals with Mental Illness Act of 1986 (P.L. 99-319) authorizes advocacy on behalf of people with mental illness, focusing on freedom from abuse and neglect in institutions and for a period of time after discharge from such facilities.

The Fair Housing Amendments Act of 1988 (P.L. 100-430) amended the Fair Housing Act of 1968 to extend the protections afforded by the legislation to people with disabilities, adding disability to race, color, religion, sex and national origin as a prohibited basis for discrimination. This legislation represented the first extension of legislation prohibiting discrimination on the basis of disability into the private sector, paving the way for ADA.

The Americans with Disabilities Act of 1990 (P.L. 101-336) prohibits discrimination on the basis of disability in employment, state and local government services, transportation, public accommodations and telecommunications.

The Revenue Reconciliation Act of 1990 (P.L. 101-508) includes a provision called the "access credit" that enables small businesses to claim credit against taxes for half of the first $10,000 of eligible costs of complying with ADA.

The Civil Rights Act of 1991 (P.L. 102-166) reversed nine U.S. Supreme Court decisions that restricted the protections available to covered workers in employment discrimination cases and authorized compensatory and punitive damages under Title V of the Rehabilitation Act of 1973 and ADA.

The National Voter Registration Act of 1993 (P.L. 103-31) requires states to provide enhanced voter registration services through driver's license, public assistance and disability agencies.

The Telecommunications Act of 1996 (P.L. 104-104) requires telecommunications manufacturers and service providers to ensure that equipment is designed, developed and fabricated to be accessible to and usable by individuals with disabilities, if this is readily achievable.

Recommendations

While there has been considerable policy development in the area of civil rights for people with disabilities in the last decade, enforcement, education and empowerment are lagging. Expansion in some areas is needed. In particular, minorities with disabilities face multiple and unique forms of discrimination and disadvantage that restrict full participation.

Enforcement

1. Congress and the President must take action to ensure that all civil rights laws affecting individuals with disabilities are more vigorously upheld, implemented and enforced. Such measures would not only include significantly increased funding dedicated to enforcement of disability laws by DOJ, EEOC and other relevant federal agencies, but would also empower and encourage state attorneys general, state and local governments, public interest and legal services organizations, and members of the private bar to provide the means to redress discrimination against individuals with disabilities.

DOJ and EEOC are currently backlogged with numerous complaints from individuals with disabilities seeking to assert and exercise their rights under ADA. DOJ routinely returns complaints to complainants, saying that the Department is unable to investigate due to a lack of resources. Enforcement controlled and funded by a limited segment of the Federal Government cannot alone be expected to reverse the history of unequal treatment, pervasive discrimination and unjust stereotypical assumptions that have oppressed individuals with disabilities for decades. More expansive efforts are required in addition to increased effort by the Federal Government to see that all civil rights laws affecting individuals with disabilities are fully enforced.

The affirmative action requirements of Section 501 and Section 503 of the Rehabilitation Act that apply to the Federal Government and federal contractors should be fully implemented. Such implementation should not include the common practice of singling out only certain disabilities for such efforts. NCD is opposed to the practice of targeting one or two specific disabilities. Instead, the entire class of people with disabilities should be included in affirmative action programs.

DOJ should more vigorously enforce the National Voter Registration Act, ensuring that people with disabilities are provided with voter registration services at appropriate locations.

NCD should regularly convene forums to develop strategies that would guide enforcement.

Strengthening Civil Rights Laws

2. Congress should retain current civil rights laws ensuring that standards promulgated under ADA are not lowered and should, where necessary, enact legislation to strengthen current civil rights laws so that

a) a private right of action is guaranteed to redress all violations;

b) employment and other contracts may not be construed to waive or supersede procedural safeguards and remedies contained in law;

c) violators of civil rights laws are subject to liability for compensatory and punitive damages in all cases, with or without the intervention of the Federal Government;

Federal agencies violating Section 504 of the Rehabilitation Act and other disability rights laws should be liable for compensatory and punitive damages.

d) collection of costs and full attorneys' fees is authorized without statutory limitation;

e) affirmative action is required for all individuals with disabilities, including those working in the private sector;

The persistent high level of unemployment and underemployment of people with disabilities warrants the application of affirmative action as a policy remedy. This recommendation would expand the existing affirmative action requirements for the Federal Government and federal contractors to the private sector. Even those who are not proponents of affirmative action acknowledge that it can have a positive impact on increasing the employment rate of a particular group of people. Affirmative action requirements should not include quotas, reverse discrimination or preferences for unqualified individuals.

f) public communications and telecommunications law is expanded to include the provision of captioning and audio description for all materials available to the public;

g) consistent standardized universal building codes are developed, implemented and required, at the level of standards promulgated under ADA or a higher level;

h) discrimination on the basis of genetic information is prohibited using the standards currently used to prohibit discrimination on the basis of disability.

Medical Directives and Personal Choice

3. The Federal Government should act to protect children and adults with disabilities by ensuring that "do not resuscitate" and "no cardiopulmonary resuscitation" orders and similar medical directives are carried out in a manner consistent with the standards of nondiscrimination set out in civil rights and other statutes. This policy should in no way limit the rights of adults with disabilities to make their own personal choices and to exercise unrestricted control regarding medical orders and treatment for themselves. Individuals with disabilities who are considering such medical directives or limitations on their own treatment should, however, be provided with complete information on the ramifications of their decisions and the full range of community support and medical resources available to them.

Implementation

4. The Federal Government should encourage state, tribal, county and municipal governments; regulatory agencies; territorial and regional authorities; public licensing agencies; public schools; zoning boards; accreditation groups; and private organizations and entities to adopt disability policies, standards and requirements that are consistent with ADA to help eliminate discrimination and ensure equality of opportunity, full participation, independence, and inclusion.

Nondiscrimination, independence, and inclusion should be the norms throughout the United States, and ADA provides a minimum national standard. Individual litigation based on federal law is not and should not be the only means for effective elimination of discrimination and the implementation of the civil rights of people with disabilities. For example, for certain industries and activities compliance audits could be a condition of licensing permission for public fund-raising. In other cases, violations of nondiscrimination standards would be a basis for revocation of professional licenses or disbarment of a corporation.

Technical Assistance

5. Congress should appropriate significant funds to agencies responsible for enforcing civil rights laws so that they can develop and fund innovative collaborative efforts and partnerships of traditional and nontraditional entities to ensure the effective implementation of ADA. Agencies should collect information and develop a database about effective implementation strategies.

6. The Congress and relevant federal agencies should ensure that organizations funded to provide technical assistance and training related to ADA, including the Disability Business and Technical Assistance Centers, are controlled by people with disabilities. Additional funds should be appropriated to expand such technical assistance.

Technical assistance can be an effective tool to avoid litigation. After six years of the provision of technical assistance, effective models can be identified and expanded. Standards for technical assistance should be developed by an interagency disability committee or NCD. All training and technical assistance provided should be fully accessible in the broadest sense and should reflect multicultural and cross-disability diversity.

Effective technical assistance must involve both people with disabilities who are knowledgeable about disability issues and people with technical expertise. Sometimes people with disabilities have both disability expertise and technical expertise. Usually people with disability expertise and people with technical expertise (such as architects, builders and attorneys) must form partnerships to ensure that the technical assistance is accurate and effective. Care needs to be taken to ensure that technical assistance is not provided by organizations that do not have expertise in both areas. Too often one or the other prevails and the outcome is less than optimal. Too often people with disabilities are not in leadership positions.

Education and Training

7. Congress should authorize and fund education and training programs to promote greater independence and empowerment of all individuals with disabilities, including elementary and secondary students with disabilities, those with traditional disabilities, and those with disabilities that are less widely recognized. The mission and funding of independent living centers should be expanded to carry out such education and training for this broader population.

Materials and training must inform people with disabilities about their rights under state, local and federal laws as well as how to exercise them and how to utilize complaint mechanisms when they are violated. All such educational, training and informational materials should be developed and reviewed under the direction of people with disabilities. The training should utilize peer training and emphasize cross-disability issues. Materials should be accessible in format and available in various languages as well as to people of diverse ethnic and cultural backgrounds. Materials should be targeted to various age groups, including youth. The Federal Government should provide such training directly and should distribute materials directly as well as through federal, state and local governments and territorial authorities.

8. Congress should require all federal agencies and recipients of federal funds, including those based abroad, to undergo training about civil rights laws that affect people with disabilities.

A mechanism should be established to provide for the development and administration of standards for such education and training programs. Such a mechanism could be a task force comprising a majority of people with disabilities. The task force could also audit compliance with education and training requirements.

Media Campaign

9. The Congress and the administration should allocate resources to develop a national media campaign to educate the public about issues, concerns and civil rights of all people with disabilities.

The Federal Government and Congress have funded and launched several effective national media campaigns designed to increase public awareness about important social issues. A multimillion-dollar HIV/AIDS awareness and education campaign utilizing television, printed materials and mailings, and technical assistance for the workplace has had a significant impact on Americans' understanding of HIV/AIDS. Similarly, campaigns to educate citizens about drug abuse and to promote a drug-free culture have had an important impact on the American consciousness.

Education

We must continue to be courageous in our commitment to improve the lives of our citizens with disabilities, most especially children, and in making American schools the best they can be for all of our children. For the sake of America's future, we can do no less.

Senator Bill Frist1996

Laws like IDEA are investments in the future of our families and our nation. IDEA is designed to help ensure that our nation's disabled children can grow up and lead proud, productive independent lives.

Senator Tom Harkin1996

When kids with special needs were first given the opportunity to go to school, they were separated. That's how it was done because that's what we thought was best. Now we know that it's better for kids with and without disabilities to grow up and learn alongside one another. We need to start out when they are young so that these kids, when they are our community leaders, will accept people who are different and give them the opportunities to succeed that everyone deserves.

Kathy Martin, parentFlorence, Alabama20 Years of IDEA in America1996

IDEA has made a difference for Maddie, a difference that translates into her attendance at our public elementary school a half a block from our home with other first and second graders in her neighborhood. Her regular presence in school means that kids of all ages greet her on the playground, acknowledge her in stores, and expect that she is a part of the community.

Joe Wild Crea, ParentDenver, ColoradoImproving the Implementation of the IDEA:Making Schools Work for All of America's ChildrenNational Council on Disability1995

For youngsters with disabilities, as for youngsters without disabilities, education is the key to the future. Historically denied access to elementary and secondary school as well as higher education, people with disabilities remain less educated than their nondisabled peers. Like people without disabilities, people with disabilities are more likely to experience benefits in employment and economic well-being when they are well educated. Like people without disabilities, people with disabilities experience education as a lifelong endeavor. NCD believes that quality education for our youngsters--those with and without disabilities, side by side--holds great promise for increased integration in future generations.

Access to Elementary and Secondary Education

The Individuals with Disabilities Education Act (IDEA), enacted in 1975, promised access to a free appropriate public education for elementary and secondary level students with disabilities. Before the enactment of the law, one million children with disabilities were excluded from school, and half of those who were being educated were not receiving appropriate programs in public schools. Many were housed in large state institutions. Today 5.3 million students with disabilities--12 percent of the elementary and secondary school population--receive special education services.

Early landmark Supreme Court decisions established that the responsibility of states and local school districts to educate youngsters with disabilities is derived from the equal protection clause of the Fourteenth Amendment to the Constitution. IDEA was guided by the principles of these court decisions in ensuring a free appropriate public education for every child with a disability, determined on an individualized basis and delivered in the least restrictive environment. The rights of children with disabilities and their families are protected through procedural safeguards.

The law requires that students with disabilities be educated in general education settings alongside their peers without disabilities to the maximum extent appropriate. While 94 percent of students with disabilities are in educational placements in regular school buildings, 40 percent are in regular school classes. During the last five years, the percentage of general education classroom placements has increased by about 10 percent, while the use of resource rooms has decreased. Placements in separate classes and separate facilities have remained about the same (Department of Education [DOED] 1995b.) IDEA authorizes the Federal Government to pay up to 40 percent of the cost of educating students with disabilities. The current federal contribution is approximately 7 percent; 12 percent is the maximum reached since the law's enactment.

ADA and Section 504 of the Rehabilitation Act (when federal funds are involved) prohibit discrimination against students with disabilities in public and elementary and secondary private schools.

Early Intervention and Preschool Services

Public policy has increasingly acknowledged the efficacy of providing services as early as possible to youngsters with disabilities and their families. The family-centered focus of early intervention services is often cited as a particularly effective and beneficial service delivery approach. As of December 1, 1993, early intervention programs served approximately 150,000 infants and toddlers from birth to age three. As of October 1, 1994, every state in the nation was participating in the early intervention program authorized under Part H of IDEA (National Early Childhood Technical Assistance System 1995b). The number of preschool children (aged three to five) with disabilities receiving services has increased from 261,000 in 1986 to 528,000 in 1995 (National Early Childhood Technical Assistance System 1995a). Because of individualized early intervention services, these students reach school better equipped to learn and participate.

Transition from School to Adult Life

By the mid-1980s, a number of studies and reports had documented high levels of unemployment, economic instability, dependence and social isolation among young adults with disabilities. Youth with disabilities were not being admitted into vocational education programs. These findings, coupled with an increased emphasis on independent living for persons with disabilities, prompted the development of school-to- work initiatives intended to assist students with disabilities in making successful transitions to adult life when they leave high school. Planning for the transition takes place while students are still in high school and often emphasizes participation in work sites and other community-based settings prior to graduation. Evaluations of transition initiatives in states are currently under way. Recently enacted school-to-work legislation further extends transition activities for students with and without disabilities.

Postsecondary Education

Students with disabilities are increasingly participating in postsecondary education and higher education; however, they remain behind their peers without disabilities. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act and ADA include institutions of higher education in their anti-discrimination prohibitions. Colleges and universities are required to make accommodations for students with disabilities and to provide auxiliary aids and services.

One study found that when students with disabilities had been out of high school three to five years, fewer than one-third had enrolled in postsecondary education programs, less than half the rate of youth in general (DOED 1993). However, there is some evidence of progress. In 1991, almost 9 percent of college freshmen were students with disabilities, whereas in 1978 less than 3 percent were students with disabilities (DOED 1995a). The 1994 Harris poll indicated that the percentage of adults with disabilities who had completed at least some college increased from 29 percent in 1986 to 44 percent in 1994.

ADA and Section 504 of the Rehabilitation Act also prohibit discrimination in trade and vocational technical schools.

Results for Students

Results for students with disabilities have improved in the last two decades. Between 1984-85 and 1991-92, the percentage of students with disabilities completing high school rose from 55 percent to 64 percent. The dropout rate for high school students with disabilities decreased from 27.4 percent to 22.4 percent between 1986-87 and 1991-92 (DOED 1994). Despite this progress, students with disabilities still lag behind their peers without disabilities in educational outcomes. Graduates out of school up to five years report employment rates about 18 percent higher than school dropouts (DOED 1995a); however, students with disabilities remain less likely than students without disabilities to graduate from high school. Although college graduation levels have increased for students with disabilities, they remain lower than for those without disabilities.

Relationship between Education and Employment

There is a strong association between educational attainment and the future employment achievement of people with disabilities. Twenty-two percent of people with disabilities with less than a high school education report being unable to work. In contrast, 2 percent of those with disabilities who have completed college report being unable to work. Jobs that require higher levels of education are often more flexible for people with disabilities, frequently offering greater control over the pacing of work and options such as working at home (LaPlante 1995b).

School Reform and Students with Disabilities

Inclusion of students with disabilities in state-initiated school reform efforts across the country has been of considerable concern to NCD for several years. Historically, students with disabilities have been completely or partially excluded from school reform efforts in all but a few states. The federal Goals 2000 school reform legislation (see below) assumes that all children are ready to learn and specifically includes students with disabilities in its coverage.

Issues such as the appropriate inclusion of students with disabilities in state-wide performance testing have raised questions among educators and the disability community. Concern over issues such as these prompted the Congress to mandate a study by the National Academy of Sciences on school reform and students with disabilities. The Academy will issue its final report in 1996.

Current Issues of Concern under IDEA

NCD (1995b) presents an in-depth analysis of current issues related to the education of students with disabilities in its recent report Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America's Children. Key issues addressed in that report include the following.

Least Restrictive Environment

While the principle of educating students with disabilities alongside their nondisabled peers has been well-established for over two decades, too many students with disabilities still must fight to be a part of general education classes and the general education curriculum. In some school districts, state funding methods provide financial incentives for placement of students with disabilities in separate facilities. Placing students in separate settings solely on the basis of their disability and without regard to their individual needs is clearly prohibited by law. However, it is equally inappropriate to place students with disabilities in regular education classrooms without the supplemental aides and services they need. General educators often lack training in providing instruction for students with special needs. They often lack paraprofessional or auxiliary staff to assist them in making accommodations or delivering services.

Many schools, however, do serve students with disabilities quite effectively in general education classrooms. When school districts have made a concerted effort to meet the needs of students with disabilities in general classroom settings, they have been quite successful.

Assessment and Labeling

The current system of identifying students as eligible for special education sometimes results in the stigmatizing of children, fails to identify some needy students as eligible, overidentifies minority children as disabled in some situations, underidentifies minority children as disabled in other situations, and often employs assessment criteria that are inappropriate for students or insensitive to their cultural and communication backgrounds. Children continue to be misdiagnosed and mislabeled and tests are sometimes administered in a language other than the student's native language or mode of communication.

African-American students and non-English-speaking students are overrepresented in special education. While about 12 percent of the general population of students are African American, about 24 percent of secondary special education students are African American (SRI International 1993). An analysis of DOED data found tremendous variation by state in the percentage of African-American students in special education. While 47 percent of special education students labeled mentally retarded in Alabama were African American, only 6 percent of those in New Jersey were African American (Shapiro 1993).

Developing methods and safeguards to ensure nondiscrimination and equal access for minority students with disabilities is of critical importance. The impact of inadequate or inappropriate educational services extends well into adulthood: the employment rate of minorities with disabilities is lower than that for nonminorities with disabilities.

Parents' Perspective

Parents report deep frustration in their efforts to access appropriate services for their children. Resistance from school personnel is pervasive, according to many parents. Some describe their efforts as "battling" with the system to secure what has been guaranteed by law for over two decades.

In spite of provisions mandating parent participation in decision making, parents in many parts of the country remain excluded from the process. Many report arriving at individualized education program meetings only to be presented with a completed program. Many parents, particularly those with low incomes or those who are minorities, remain uninformed or ill-informed of their rights under the law.

Discipline

The current reauthorization of the IDEA has generated considerable controversy over the issue of disciplining students with disabilities in school. It has been alleged that students with disabilities are subject to more lenient disciplinary procedures than students without disabilities.

IDEA precludes the violation of the due process rights of students with disabilities, and the vast majority of school districts have determined ways to effectively discipline students without violating their rights. However, there is considerable evidence that students with disabilities are inappropriately excluded or removed from school because of behaviors associated with their disabilities. A study of suspensions and expulsions in the state of Minnesota found that while students with disabilities constituted 8 to 12 percent of the student enrollment, between 16.5 percent and 33.3 percent of the suspended students were students with disabilities (Minnesota Department of Children, Families and Learning 1996). A Delaware study found that students with disabilities accounted for a disproportionate number of suspensions for weapon possession ("Educators Find" 1995). A Kansas study found that students with disabilities are more than twice as likely to be suspended or expelled as other students (Cooley 1995).

Many instances of disciplinary problems are the result of inappropriate, inadequate or nonexistent programming for students with disabilities, often due to lack of training of professionals or limited resources for support services for students. Few regular education teachers are trained in special education. NCD is greatly concerned about efforts to weaken the requirements of IDEA that would allow or invite increased suspensions and expulsions of students with disabilities. Disciplinary action has historically been used as a means of excluding students with disabilities from public school.

Key Legislation in the Past Decade

The Handicapped Children's Protection Act of 1986 (P.L. 99-372) overturned a Supreme Court decision and clarified that courts may award attorneys' fees to parents who prevail in administrative or judicial proceedings brought under IDEA.

The 1986 Amendments to the Education for All Handicapped Children Act (P.L. 99-457) established Part H, an early intervention formula grant program that assists states in developing a coordinated, comprehensive statewide network of early intervention services for infants and toddlers with disabilities. The amendments also expanded the preschool program to ensure that all children with disabilities between the ages of three and five were receiving appropriate services, and they expanded transition programs for adolescents.

The 1990 Amendments (P.L. 100-630) renamed the Education for All Handicapped Children Act the Individuals with Disabilities Education Act (P.L. 102-119), required transition services to be provided at age 16 or younger if appropriate, revised the definition of "children with disabilities" to create separate categories for autism and traumatic brain injury, and included provisions for the preparation and retention of personnel who are racial and ethnic minorities.

The Americans with Disabilities Act of 1990 (P.L. 101-336) prohibits discrimination on the basis of disability in private elementary and secondary schools as well as institutions of higher education.

The School-to-Work Opportunities Act of 1994 (P.L. 103-239) authorizes funds for programs to assist students, including students with disabilities, in the transition from school to work.

The Goals 2000: Educate America Act of 1994 (P.L. 103-227) provides a framework for meeting national education goals by promoting coherent, nationwide, systemic education reform and improving the quality of learning and teaching in the classroom and in the workplace. Students with disabilities are explicitly included in Goals 2000 programs and activities.

The 1996 Amendments to the Individuals with Disabilities Act were pending in Congress as this report was printed.

Recommendations

Despite progress in the last decade in educating students with disabilities, current federal and state laws have failed to ensure the delivery of a free and appropriate public education for too many students with disabilities. Students with disabilities often still find themselves in forced and inappropriate isolation, separated from their nondisabled peers. In other situations, students with disabilities are in regular education classrooms with teachers with little or no training in how to educate students with disabilities and without the supports they need. Lack of accountability, poor enforcement and systemic barriers have robbed too many students of their educational rights and opportunities and have produced a separate system of education for students with disabilities rather than one unified system that ensures full and equal physical, programmatic and communication access for all students. Parents and students across the country express a high level of frustration with the continued barriers they face to full participation and effective instruction.

A Unified System

1. The Congress and state governments should mandate a unified system of education and training that will ensure equal physical, programmatic and communication access to all education programs, facilities and related benefits of education for all students while meeting the individual needs of all students, including those with disabilities. The mandate should include a firm timetable for retraining teachers, changing systems, and training parents and students about the new education policies. A single system of education should include the following features:

a) Placements

i) Educational or training systems would presume that every child is capable of learning in a regular classroom setting. Special education should assume the role of a supportive service within the context of regular education. Each classroom should be assigned sufficient qualified personnel to meet the needs identified in each student's individualized education program. Students and their parents who believed that their educational needs could not be met in a regular classroom setting could challenge this presumption and seek a placement that would meet their educational needs.

ii) Funding for education would be modified to be placement neutral. Services should be provided where the student could best be educated.

iii) Information about effective practices for inclusion of students with disabilities in general education would be collected and disseminated nationally.

iv) All students, with or without disabilities, would benefit from an individualized education plan.

b) Teaching

i) All teachers who were trained and certified would have general knowledge about educating students with disabilities.

ii) Specialists in particular areas, such as braille, sign language instruction, and computer technology, would be part of a cadre of resource personnel available to support students with a range of special needs in the general instructional program as specified in their individual education programs.

c) Curricula

i) Curricula and textbooks for all students would be culturally sensitive and include the study of disability culture and disability rights.

ii) Publishers of textbooks would include accurate portrayals of people with disabilities in textbooks and in photographs and illustrations.

iii) All students, including those with disabilities, would be included in school reform initiatives.

iv) The content of all curricula, including written, verbal, and computer-based materials, would be accessible to all students. Especially, students with sight, hearing and learning disabilities would be taught with methods and materials that met their communication requirements.

Due Process Protections

2. The Congress and the Federal Government should ensure that current due process protections for students under IDEA are not weakened and that they are fully enforced.

Technology

3. The Congress, the Secretary of Education, state education agencies and educational organizations should promote the maximal use of modern technology in education by

a) requiring training in the availability and use of assistive technology (both equipment and software) as a part of teacher education programs, both inservice and preservice;

b) requiring that the individualized educational plan for each student with a disability address the need for assistive technology at school and at home as a part of the educational program;

c) requiring that schools notify students with disabilities and their parents of assistive technology and technology funding options available for educational programs;

d) maximizing the use of technology to promote participation by all students in the learning process;

e) ensuring adequate funding for assistive technology.

Accountability

4. The Secretary of Education and state governors should enforce compliance with federal and state education laws. Local education agencies should be held accountable for student outcomes. Specifically:

a) Principals, teachers and other staff must be held accountable to the same extent they are held accountable for all students for ensuring the full physical, programmatic and communication access of all students to all curricular, extracurricular and nonacademic programs and activities.

b) School systems and state agencies must be held accountable for providing a fully unified education system that includes a full range of placement options suitable to meet the unique individual needs of each child.

c) Schools must establish high educational expectations for all students and be accountable for the results of student learning.

d) School systems must be required to provide all students with disabilities with the accommodations and/or alternative assessment methods they need to effectively participate in statewide testing programs.

Accessibility of Schools

5. The President and heads of relevant Cabinet agencies should more strongly enforce the accessibility provisions of ADA and the Rehabilitation Act and state governments must enforce state accessibility laws to ensure better accessibility in schools for students, parents, teachers, staff and members of the public with disabilities.

Postsecondary Education

6. The President and the Congress should insist on strong enforcement of ADA and the Rehabilitation Act in higher education settings and should develop mechanisms to expand access and support services for students with disabilities who seek to enter or who are participating in postsecondary education.

Career Planning

7. The Secretary of Education and the Secretary of Labor should expand initiatives to promote effective transition from school to work or postsecondary education for all students, both with and without disabilities, with a clear expectation that work is the ultimate goal.

Additional Recommendations

The following recommendations related to effective inclusion were made by the caucus of students with disabilities who attended the National Summit on Disability Policy in Dallas.

1. More funding should be designated for transportation for students with disabilities.

2. Schools should design students' schedules with their disabilities in mind, for example, taking into account mobility needs when students are expected to change classes.

3. Access to existing buildings should be increased (e.g., by providing more ramps, elevators and accessible restrooms.

4. Students should receive more time and assistance from instructional aides.

5. If students with disabilities decide to form peer groups or clubs, school administrations should support them.

6. All students should participate in a curriculum that covers:

a) ADA,

b) the history of disability culture,

c) positive attitudes,

d) listening skills,

e) patience,

f) appropriate terminology.

7. Teachers should participate in student advocacy training and make use of group projects and student-assisted academics so that the abilities of all students can be demonstrated.

Employment

The company accommodates me so I can feed my two children and pay my taxes.

David Vice, MechanicIndiana1995(NCD ADA Report, p. 85)

Before ADA, I could go to a job interview and the employer could say, "We won't hire you because you're disabled," and I had no legal recourse.

Tim HarringtonOhio1995(NCD ADA Report, p. 13)

Together with exciting new technology, improved rehabilitation techniques, better education and changing public attitudes, real work for real wages is more than a dream; it can be a reality.

Susan M. DanielsSocial Security Administration1995

People with disabilities want to work. When people with disabilities work, the economy benefits. When people with disabilities work, our society is enriched. However, the overriding message sent to people with disabilities through our public policies is that they are not expected to work. Public policy most often creates a path to premature retirement for people with disabilities, not one to rehabilitation and work. Over 95 percent of federal funds spent on people with disabilities are targeted for supporting dependency. Little is spent on supporting people in pursuing and maintaining employment. Too often, health insurance is accessible for people with disabilities only if they do not work. The national employment policy agenda has never included people with disabilities.

Despite accomplishments in medical rehabilitation, technology, education, and civil rights, it should not come as a surprise that the employment rate among people with disabilities has not increased in the last decade. For most people with disabilities, the barriers to working remain significant and working is too often an irrational choice. Entry-level minimum-wage jobs rarely pay enough for an individual with significant disability-related needs to be able to live on the income and meet those needs. Essential services, such as personal assistance and assistive technology, are often subsidized only through public health insurance, which is generally available only to people who are not working. Private health insurance often precludes coverage for preexisting conditions and offers minimal coverage for mental health needs and long-term supports and services. While there is a well-established and well-funded system to support people with disabilities in dependency, there is relatively little support for their efforts to be independent.

Employment Rate

People with disabilities remain significantly less employed than they would like to be, and significantly less employed than other Americans. Polls conducted by Lou Harris and Associates in 1986 and 1994 reveal that two-thirds of working-age people with disabilities are not working. An overwhelming majority who are not working (66 percent in 1986 and 79 percent in 1994) indicate that they want to work. Data from the Current Population Survey of 1995 confirm that the employment rate of people with disabilities has remained consistently low over the last decade. In 1995, only 28 percent of the 16.8 million working-age noninstitutionalized Americans with work disabilities were employed, while 75 percent of working-age Americans without disabilities were employed.

Women and minorities with disabilities face dual discrimination and employment challenges. Their employment rates have consistently been lower than those for men and Whites with disabilities. African Americans represent a significantly larger proportion of working-age people with disabilities than do Whites or Hispanics, and as a group they are more severely disabled. While the full-time employment rate for Whites with disabilities was 15.9 percent in 1992, it was 7.2 percent for African Americans and 8.2 percent for Hispanic Americans (Braddock and Bachelder 1994). The earnings of women with disabilities with full-time jobs were only 65 percent of the earnings of men with disabilities who were employed full-time (Bowe 1992). Women with disabilities are more frequently employed part-time, rather than full-time, than men with disabilities. Integrated employment opportunities in sheltered employment are less available to women than men (Blanck 1991), as are promotion opportunities (Blass and Elliott 1993).

Employment Statistics

The Bureau of Labor Statistics in the Department of Labor (DOL) and the Census Bureau in the Department of Commerce regularly collect, analyze and disseminate employment data aggregated on the basis of gender, race, ethnicity, age and geography. No such data are collected or reported for people with disabilities. The most frequently cited data about the employment of people with disabilities are gathered from the March supplement to the Current Population Survey. These data are collected only once a year, whereas for other groups they are collected and reported monthly. Furthermore, the question used to determine the employment status of people with disabilities was not designed for the purpose of tracking employment.

Public Policy: Too Often a Path to Premature Retirement

The vast majority of adults with disabilities become disabled as adults, many while they are working. The response to this adult onset of disability generally comes through the state workers' compensation system or the private disability insurance system (car insurance, short-term and long-term disability insurance). Too often these systems emphasize compensation for the acquisition of a disability and retirement from the workforce. Retirement is sometimes inadvertently promoted by emphasizing the extent of an impairment and the residual dysfunction. There is rarely motivation to assess the individual's functional capacity and productivity with appropriate accommodations. There is little sustained long-term focus on returning to work or retaining the individual at work. As gatekeepers to most benefit-providing systems, medical doctors focus on medical assessments and documentation of disability. Little attention is given to long-term vocational assessments or accommodations that would enable employment. By focusing on the disability rather than the ability, our national disability policies and programs leave many employment opportunities unrealized.

Throughout the years, national employment policies and initiatives have often promoted full employment throughout the nation and offered training, job placement, reeducation programs, employment services, unemployment services, etc. People with disabilities have never been routinely considered as a potential part of the labor force and as part of large-scale training, education and employment initiatives for the general workforce. Disability is poorly understood and communicated in the nation's larger employment policy agenda. The implicit assumption is that people with disabilities are not expected to be part of the workforce.

Labor Market Trends

People with disabilities are disproportionately affected by labor market trends. While the labor force participation of men has declined steadily since the 1970s, the largest decline has been among disabled men aged 55-64 (Yelin 1993). Women's labor force participation has steadily increased since the 1970s; however, the increase has been less for women with disabilities than for women without disabilities (Yelin 1991). The level of full-time employment for workers without disabilities has remained relatively constant over the last several years, while it has decreased for workers with disabilities. Part-time employment has increased for both disabled and nondisabled workers, though it has increased more for workers with disabilities (Yelin and Katz 1994).

Economic restructuring and the changing nature of work provide both opportunities and challenges for people with disabilities. The increasing use of telecommunication via fax machines and the Internet has led to more liberal work-at-home policies by employers and an increase in entrepreneurship and self-employment. Such developments hold promise for people with disabilities who are skilled and educated. They are appealing to people who find the rhythm of the traditional 9 to 5-work setting incompatible with their disability-related needs. However, such trends may also reduce job opportunities for less skilled workers (Lewin-VHI 1995).

Barriers and Disincentives to Work

The factors that contribute to the low employment rate for people with disabilities are many. Access to private health insurance is increasingly cited as the key obstacle to employment, particularly in light of the increase in part-time work, which rarely brings access to health insurance. With underwriting practices, preexisting-condition exclusions and limits on benefits acting as critical disincentives, many people with disabilities seek Social Security benefits in order to gain access to public health insurance. However, current discussions about revising Medicaid and Medicare may result in closing this route of access to public health insurance. As jobs become increasingly less secure, because of downsizing and merging trends, people with disabilities may find the relative security of benefits even more appealing.

Other barriers to work cited by people with disabilities include loss of benefits; disincentives to work in benefit programs; lack of access to personal assistance services; lack of access to assistive technology; inadequate education, work experience and vocational rehabilitation; inadequate transportation; inadequate housing; negative attitudes; inaccessible transportation, housing and work sites; discrimination; and lack of opportunities for career advancement (Braddock and Bachelder 1994).

Vocational Rehabilitation and Other Federal Employment Programs

The federal and state vocational rehabilitation program has been the government's key response to the employment of people with disabilities since 1920. Over the years smaller discretionary programs, such as supported employment and projects with industry, have been developed to further target employment for people with disabilities. The 1992 Amendments to the Rehabilitation Act required state vocational rehabilitation agencies to provide for the individual's choice of services and service providers; to focus on careers, not just entry-level jobs, and to presume that most individuals with disabilities are employable. Because resources are not sufficient to serve all who apply, priority is given to those with the most severe disabilities. In addition, states develop an order-of-selection priority, which determines who will be served in each state. With approximately $2.3 billion in federal funds, targeted employment services programs for working-age adults with disabilities serve about 1 million individuals per year, placing about 200,000 per year in employment. Despite their successes, targeted employment programs for people with disabilities have never made a noticeable impact on the employment rate nationwide.

Generic employment and training programs in the DOL report that they serve thousands of people with disabilities every year through the Job Training Partnership Act, the Employment Services Office and veterans programs. Despite the fact that these programs are covered by the Americans with Disabilities Act (ADA), many people with disabilities report that they have difficulty accessing services through generic programs. They report that the services they need may not be available or accessible and that the programs do not see it as their role to serve people with disabilities.

The 1994 Lou Harris poll of 1000 people with disabilities reported that employed adults with disabilities were much more likely to have found their jobs through personal contacts than through structured services. Only 4 percent reported that special programs for people with disabilities had assisted them in finding employment, while 5 percent reported that generic employment services had assisted them in finding a job.

Supported Employment

The concept of supported employment emerged in the early 1980s as a response to dissatisfaction with the unemployment of people with developmental disabilities or their segregation in day activity programs and sheltered workshops with low or no wages. As evidence emerged about the capabilities of people with significant developmental disabilities to work and live successfully in the community, people with disabilities, their advocates and progressive policy makers developed a national initiative to promote jobs in the community with individualized support. After a decade of investment and implementation, over 110,000 people have had access to supported employment, with an annual federal investment of over $40 million (Mank in press). The majority of individuals with significant developmental disabilities remain placed in segregated facility-based sheltered workshops and adult day programs. Supported employment has often become an "add-on" to these services. The extended supports are not available to enable Social Security beneficiaries to use supported employment as a route to leaving Social Security benefit rolls. Efforts to change systems in states have produced only modest local changes.

The Private Sector

Polls repeatedly indicate that employers support the employment of people with disabilities and experience people with disabilities as good employees. A 1995 poll of 300 chief executive officers and human resource managers in Fortune 5000 companies found that 73 percent of the top industries across the country are currently hiring people with disabilities. Most reported that ADA has had a positive impact on corporations; only 16 percent believed it has had a negative effect (President's Committee on Employment of People with Disabilities [PCEPD] 1995). Lou Harris and Associates surveyed employers in 1986 and again in 1995 and found strong support for ADA and the employment of people with disabilities. The employment antidiscrimination provisions of ADA apply to 666,000 businesses employing about 86 million people.

The percentage of companies reporting that they have made accommodations in the workplace increased from 51 percent to 81 percent between 1986 and 1995 (Lou Harris and Associates 1995). Furthermore, the costs of accommodations did not appear significant, with about half of employers saying costs increased a little between 1986 and 1995 and 32 percent reporting no increase. The Job Accommodation Network operated by PCEPD to assist employers in developing specific work accommodations has consistently reported that the majority of accommodations cost less than $500. One case study of Sears, Roebuck and Co. (Blanck 1994a) found that 97 percent of accommodations involved little or no cost.

Analysis of one national data set indicates that between one-fourth and one-third of workers who become impaired on the job are accommodated following onset of disability. Those who are accommodated at work are more likely to stay employed than those who are not. Most who continue to work after the onset of disability remain with their current employers. (Burkhauser, Butler and Kim 1994; Daly and Bound 1994).

Despite the positive attitudes of many employers and the effectiveness of job accommodations, many companies are still not hiring people with disabilities. Lou Harris and Associates (1986, 1995) found that the percentage of companies that had hired people with disabilities within the last three years changed only slightly between 1986 and 1995--from 62 percent to 64 percent. The most commonly cited reason for not hiring people with disabilities, both in 1986 and 1995, was a lack of qualified applicants.

One incentive in the tax code intended to promote the employment of people with high levels of unemployment is the Targeted Jobs Tax Credit. Enacted in 1977 and renewed periodically since that time, the provision allows a credit to employers for hiring members of specific disadvantaged groups. People with disabilities are one of several targeted groups, representing a small portion of those hired under the credit (about 7 percent in 1987). No data are available about the impact of the credit on the employment rate of people with disabilities or on employers of people with disabilities.

Shortly after ADA was enacted, a disability access credit was enacted, amending the tax code to provide tax relief to small businesses that incur eligible costs in complying with the law. The credit was an addition to the Section 190 deduction, which has been available to businesses since 1976 for expenses incurred in removing barriers. No data are available about the use by employers or businesses of either of these tax code provisions (Schaffer 1991).

Key Legislation in the Past Decade

The Rehabilitation Act Amendments of 1986 (P.L. 99-506)amended the definition of "severe handicap" to include functional as well as categorical criteria and clarified that part-time work and supported employment are viable outcomes of rehabilitation services. States were required to plan for individuals making the transition from school to work.

The Americans with Disabilities Act of 1990 (P.L. 101-336)prohibits discrimination on the basis of disability in businesses with 15 or more employees. Qualified individuals with disabilities are protected by the law. Employers are required to provide reasonable accommodations so long as they do not impose an undue hardship on the business.

The Revenue Reconciliation Act of 1990 (P.L. 101-508) amends the tax code with an "access credit" intended to provide tax relief to small businesses that incur eligible costs when complying with ADA.

The Rehabilitation Act Amendments of 1992 (P.L. 102-569) require state vocational rehabilitation agencies to provide for the individual's choice of services and service providers; to focus on careers, not just entry-level jobs; and to presume that most individuals with disabilities are employable. Initiatives to ensure participation of minorities were authorized.

The Family and Medical Leave Act of 1993 (P.L. 103-3) allows workers to take up to 12 weeks of unpaid leave from work every year to care for newborn or adopted children, to care for family members with serious health conditions, or to recover from serious health conditions.

The Targeted Jobs Tax Credit (P.L. 74-271) allows employers to claim a credit equal to 40 percent of the first $6000 in wages of a person hired in a category of chronically unemployed workers. This credit has been intermittently renewed over the last decade, but has lapsed at the time this report is being written.

Recommendations

We know definitively that people with disabilities, including those with severe disabilities, can be effective workers and contribute to the economy. It is not the capacities of people with disabilities that limits their employment, but outdated attitudinal, organizational, societal and policy barriers.

General Employment Policy

1. The President, the Congress and federal agencies should ensure that all generic employment and labor policy and programs presume that people with disabilities are part of the American workforce.

As long as people with disabilities are viewed as outside of the labor force, they will never fully join the mainstream of American life. The appropriate role of all federal policy is to support people with disabilities in maximizing their employment.

Inclusion of People with Disabilities

2. The Congress and the President should ensure that all policy initiatives and programs having an impact on educational attainment and employment opportunities are designed and implemented to meet the needs and maximize the talents of all individuals, including those with disabilities.

Employment and training programs for people with disabilities should be integrated with employment and training programs for all other Americans. Accommodations and specialized services and supports should be provided as needed in the generic programs to people with disabilities. For example, direct communication access should be ensured for people who are deaf or hard of hearing. An overhaul of federal and state systems may be required to achieve a generic system that provides accommodations and access in order to successfully meet the needs of people with disabilities.

Employment Goals

3. The President should issue an executive order directing the Secretary of Labor to promote the employment of people with disabilities and to establish employment goals for people with disabilities to be reached by the year 2006.

Establishing national goals is an effective way to galvanize public attention, build broad support and provide a public mechanism for policy accountability. The nation has effectively used this process in campaigns to improve the health of the nation's citizenry and decrease infant mortality. The secretary of labor should work in conjunction with other relevant federal agencies and the disability community to establish employment goals.

Employment Statistics and Research

4. The President and the Congress should direct the Departments of Labor and Commerce, through the Bureau of Labor Statistics and the Bureau of the Census and in consultation with the chairman of PCEPD, to add people with disabilities as a group within the national labor force statistics reported monthly and to monitor reasons people with disabilities report for not working. This information should be available for types of disability, state and local areas, and diverse cultural and racial groups. These statistics should be used to monitor progress toward the employment goals for people with disabilities established in the previous recommendation.

Availability of these data will enable public monitoring of progress toward meeting the employment goals. It will provide the same level of visibility for the employment rate of people with disabilities as that provided for other protected groups, such as women and ethnic and racial minorities, when their employment rates are reported. It will promote a public assumption that people with disabilities are part of the workforce.

5. The Department of Labor, in conjunction with the National Institute for Disability and Rehabilitation Research in the Department of Education, should establish research priorities consistent with achieving the targeted employment goals for the year 2006.

Labor Market Trends

6. The Secretary of Labor and the chairman of PCEPD, in conjunction with representatives from business, labor, people with disabilities and labor market economists, should assess our nation's efforts to employ people with disabilities in the context of current and future labor market trends, both nationally and locally, and should provide recommendations for maximizing the employment of people with disabilities by the year 2006.

Health Insurance

7. Congress should enact legislation ensuring that adequate health care and long-term supports--including personal assistance services and assistive technology--will be available to people with disabilities who are employed, are seeking employment or are changing jobs.

The most often cited barrier to employment for people with disabilities is lack of access to adequate health care. For many people with disabilities, the only route to secure health care is through cash benefit programs. If they work, they risk losing those cash benefits and the health insurance that accompanies them. The unavailability of long-term services, such as personal assistance services and assistive technology, is also an obstacle to achieving and maintaining employment. Furthermore, people with disabilities--even those who are highly educated with strong work histories--may find it difficult to secure jobs with salaries that are high enough to enable them to pay for the support services they require.

Enforcement of Civil Rights Laws

8. The President, executive agencies and the Congress should vigorously support full enforcement of ADA, the Rehabilitation Act and other federal civil rights laws, supporting this enforcement with adequate funding, culturally appropriate outreach and accessible technical assistance services.

Incentives for Employers

9. The Secretary of Labor, in conjunction with the chairman of PCEPD, should establish a working group of employers and people with disabilities to identify and expand meaningful financial incentives for employers to meet the needs of their employees with disabilities for workplace access, accommodations, and family support and to promote the use of existing incentives.

Many employers are unaware of or do not utilize existing incentives to employ people with disabilities, such as the disability access credit. In addition, employers have expressed a need for financial incentives to cover costs for employees with disabilities that may be beyond the bounds of the "reasonable accommodation" requirement.

Youth

10. The Secretary of Labor, the Secretary of Education and the Commissioner of Social Security should work together to ensure that generic policies and programs that target youth include youth with disabilities, sending the clear message that the goals for their adult lives are employment and independence, not lifetimes of dependence or support on benefits.

The importance of work and individual responsibility should be woven into the educational programs of youth with disabilities, including effective transition planning for students in special education and real work experiences in middle school and high school. The assumption should be that all students with disabilities have the capacity to work and should be given every opportunity to prepare for a lifetime of work.

Media Campaigns

11. The President and the Congress should provide funding for and direct federal agencies with employment and/or ADA enforcement responsibilities to initiate and carry out national, state and local media campaigns designed to change public attitudes to support the vision of inclusion, empowerment and independence set out in ADA, thereby promoting employment opportunities of people with disabilities.

Such a media campaign should be a part of the media campaign called for in recommendation 9 of the Civil Rights section of this report.

Employment of People with Significant Disabilities

12. The President and the Congress should ensure that people with significant disabilities, including those with developmental disabilities, are provided with opportunities and programs to support them in working in inclusive settings at real jobs for real wages.

Despite some progress in employing people with developmental disabilities in real jobs for real wages, many remain in sheltered workshops with sub-minimum wages and few options. Strategies such as supported employment have promoted competitive employment for people often overlooked by mainstream employers. More initiatives to ensure real jobs for people with the most significant disabilities need to be developed.

Entrepreneurship

13. The Congress and the President should develop and fund initiatives to promote innovative employment and entrepreneurship among people with disabilities.

Social Security and Other Income Maintenance

Dependency increases the costs of entitlements, lowers our gross national product, and reduces revenue to the Federal Government....People with disabilities want to work...to be productive, self-supporting and tax-paying participants in society.

Tony CoelhoChairman, PCEPD1990

Now, in the interlude between the baby boom and its echo, is the time for us to create constructive alternatives to people declaring themselves "unable to engage in substantial gainful activity." Now is the time for a new approach toward people with disabilities. Such an approach will help to alleviate the coming labor shortage, and it will do much to reduce the "disability crunch" that should arrive within a few years.

Edward Berkowitz and David DeanMay 9, 1989

The concept of income maintenance historically is one of providing income to individuals when they are unable to generate it themselves by working. Retirement because of age is the most common reason for the provision of income maintenance. Increasingly, people with disabilities have become recipients of income maintenance through both welfare and Social Security.

Social Security

At $63 billion annually, Social Security represents the Federal Government's largest expenditure on people with disabilities. When Medicaid and Medicare expenditures are added, the figure is over $120 billion.

Social Security manages two programs that provide income support (cash) to people with disabilities: Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). Beneficiaries for both programs are those who are determined to be "too disabled to work." Children are deemed eligible for SSI when they are determined to be substantially limited in their ability to function appropriately for their age. SSI is an income maintenance program serving poor people with disabilities. SSDI is a social insurance program available to those who have worked and contributed to the Social Security trust fund. Acceptance on the SSI rolls automatically confers Medicaid coverage in most states. Acceptance on the SSDI rolls automatically confers Medicare coverage after a two-year waiting period.

Both programs have expanded considerably in the last decade. From 1984 to 1994, the number of beneficiaries of the two programs combined has grown from 4.5 million to 8.5 million. Expenditures have increased from $25.3 billion to $54.9 billion. Despite this considerable federal expenditure, most people on the rolls live at or below the poverty level. The average SSI federal payment as of September 1995 was $334 per month. The average SSDI payment was $662 per month.

Most people with disabilities who become Social Security beneficiaries remain on the rolls for their entire lives. The younger an individual is who comes on the rolls, the longer she or he is likely to stay on the rolls. For example, a 9-year-old SSI beneficiary, on average, will stay on the rolls about 27 years. The percentage of young beneficiaries, those under the age of 30, has increased by 43 percent between 1989 and 1993.

A number of provisions have been enacted to promote the return to work of beneficiaries. These are outlined below. In addition, the Social Security Administration (SSA) reimburses state vocational rehabilitation agencies for the rehabilitation of SSI and SSDI beneficiaries. SSA is currently implementing a program to reimburse private providers for rehabilitation services to beneficiaries. While these incentives have yielded increased employment by those who utilize them, they have not been effective in enabling people to actually terminate their benefits and return to employment. Less than one-half of 1 percent of beneficiaries, or about 6000 people annually, leave the rolls to return to work as a result of rehabilitation efforts. This percentage has been consistent over the life of the programs.

Designed as a safety net for people who are terminally ill or too severely disabled to work, Social Security programs for people with disabilities have had the unintended effect of trapping people with disabilities in lifetimes of poverty.

It is unlikely that any reforms within the Social Security system alone will be effective in yielding a significantly increased employment level for people with disabilities. Issues such as access to adequate health insurance and wages that are high enough to meet expenses need to be addressed.

The Social Security system is based on the notion that a person can be determined to be "too disabled to work." Evolution in knowledge, policy and practice in the last decade has challenged the concept of being "too disabled to work." We now know that individuals with severe disabilities can work if they have access to appropriate support services, accommodations and health care.

The Social Security system does not encourage people with disabilities to maximize their capabilities and competencies toward the achievement of independent living. While multiple work incentives have been enacted, their results are limited.

Other Income Maintenance Programs

The other key federal income maintenance program for people with disabilities is administered by the Department of Veterans Affairs. Veterans with disabilities receive about $18.6 billion in cash per year.

While there are substantial knowledge gaps regarding the number of recipients of Aid to Families with Dependent Children (AFDC) who have disabilities, there are studies that suggest that the prevalence of disability among heads and members of AFDC households is significant (Zill et al. 1991; Doyle et al. 1990; Adler 1993). One estimate found that over one in three AFDC households includes someone with a disability and almost 20 percent of women on AFDC have a disability (Adler 1993). The disability-related needs of these individuals are rarely identified or addressed by the programs that serve AFDC recipients.

Every state runs a workers' compensation program, whereby workers who become disabled as a result of an on-the-job injury receive compensation, usually in the form of cash. These programs have become quite costly over the last decade and reforms in many states are under way. In too many instances, support for a return to work is lacking.

The other major source of income maintenance is private long-term disability insurance, most often provided to employees through employers. Often employees who stop working because of an illness or disability begin drawing payments from their employers and eventually shift onto SSDI, either as a supplement or when private payments end.

Too frequently these systems provide incentives for people with disabilities to stop working when they are capable of continued work with additional supports or modifications. Because there is no well-established or well-funded system to provide supports to maximize employment and there is a well-established system for providing cash compensation, people with disabilities may have no choice except to leave the workforce and accept the cash.

Key Legislation in the Past Decade

Limiting Eligibility for Benefits

The Contract with America Advancement Act of 1996 (P.L. 104-121) prohibits the award of SSI, SSDI, Medicaid, and Medicare benefits to people who are disabled if drug addiction or alcoholism is a contributing factor material to the determination of disability.

Work Incentives

Since the early 1970s advocates and policy makers have worked to develop incentives for people on SSI and SSDI to work. Today a patchwork of over a dozen separate provisions operate with the goal of promoting employment. While many of these have been in place for longer than a decade, most have been amended and fine-tuned within the last decade in an ongoing effort to render them more effective.

Work Incentives for SSDI Beneficiaries

Trial Work Period. A beneficiary can work for nine months without losing benefits.

Extended Period of Eligibility. For 36 months following the trial work period, cash benefits are reinstated for any month in which earnings are below the substantial gainful activity level.

Substantial Gainful Activity. After the trial work period, a person can earn $500 ($880 for people who are blind) without losing any cash benefits.

Medicare Coverage. A beneficiary receives 39 months of hospital and medical insurance after the trial work period.

Medicare Buy-In. After the 39 months of premium-free Medicare, Medicare can be purchased at the same monthly cost paid by uninsured retired beneficiaries.

Work Incentives for SSI Beneficiaries

Section 1619(A) Benefit Offset. SSI beneficiaries working at or above the substantial gainful activity level receive an offset of $1 for every $2 earned.

SSI Work Expenses for Blind Persons who Work. The portion of earnings spent by a blind person in order to work for transportation, taxes, special equipment, etc., is not counted in figuring SSI payments.

Plans for Achieving Self-Support. Beneficiaries can set aside income or resources for a period of time to meet expenses for reaching an occupational goal. The income or resources are not counted when determining the SSI payment amount.

Earned Income Exclusion. The first $65 of earnings in a month plus one half of the remainder is not counted when figuring SSI payments.

Student Earned Income Exclusion. A person under 22 who regularly attends school can exclude up to $400 in earnings per month (maximum of $1620 per year).

Work Incentives That Apply to Both SSI and SSDI

Impairment-Related Work Expenses. Beneficiaries can deduct the cost of certain impairment-related items or services needed to work (such as transportation or medical devices) from earnings.

Subsidy. The value of support a person receives on the job is deducted from earnings to determine if a person is engaged in substantial gainful activity.

Continued Payment Under a Vocational Rehabilitation Program. Beneficiaries who improve medically and are no longer considered disabled may continue to receive benefits if they are participating in any approved vocational rehabilitation program that will likely enable them to work permanently.

Recommendations

NCD concludes that the current set of policies and programs intended to provide economic security to individuals with disabilities is often a life preserver for people it serves. Cash benefits are the difference between sustenance and destitution for many recipients.

However, many features of the SSI and SSDI programs serve as obstacles to maximizing independence and self-sufficiency. Lack of access to health insurance and lack of flexibility supporting maximal employment often sentence people with significant disabilities to lifetimes of dependence. The current set of policies and programs too often functions more as a spiderweb than as a safety net, capturing people in poverty rather than supporting them to maximize their potential and their employment. The existing matrix of income maintenance and non-cash support programs is too complex, fragmented and punitive. These problems call for alternatives to reorient the program to assume and promote productivity, not dependence.

NCD envisions a system that serves as a trampoline, rather than a safety net, supporting people as they maximize their potential, catching them when they fall, and supporting their efforts toward independence again, always moving toward the goal of maximal employment. The system should function in a manner similar to our unemployment insurance system while addressing the unique needs of workers with disabilities who, due to the nature of their disability, may be unable to work continuously or at a consistent level of output. Key ingredients of this system include access to health insurance, tax credits to ensure that transitioning from benefits to employment does not produce financial disincentives, flexibility to accommodate disabilities that intermittently limit work capacity, and third parties with a vested interest in assisting people with disabilities in maximizing their employment.

Employment at the Core of Economic Security

1. The President and Congress should devise national policy that enables individuals with disabilities to develop economic security that is based on employment, not accessing benefits; and includes the supports, services and civil rights protections necessary to attain and maintain employment; and that decreases the dependency of people with disabilities.

For many people on benefits, Social Security represents their only opportunity for some degree of dignity while they are terminally ill. These individuals will never return to work. However, for the many who could work with appropriate support, both public and private income support programs must encourage work as the outcome of temporary benefits. Benefits must be constructed to provide on the path toward employment, not early retirement. The assumption that undergirds these programs should be one of productivity, not dependence. National policy should ensure that employment provides a genuine economic advantage over benefits. Currently, income maintenance policy may require a person with a disability to make a choice between a job and a personal attendant, between getting married and having health insurance, between having an income and enrolling in higher education. Economic security policy should always support maximal employment and independence and recognize investments in the future, such as higher education.

Economic Support

2. Congress should enact legislation, including amendments to the Social Security Act, that ensures a fundamental level of support for working-age adults with disabilities who are in economic need. This support should lead to employment as the desired outcome whenever possible. Key aspects of this legislation should include the following:

a) cash assistance at the poverty level that ends upon return to work but is immediately replaced by a Disabled Worker Tax Credit and a Personal Assistance Services Tax Credit, both of which are phased out as income rises;

This recommendation would be effective only if long-term services were available and if wages from employment are sufficient for self-support.

b) a de-linking of eligibility for cash benefits and other supports, including health insurance, personal assistance, housing subsidies and food stamps;

The de-linking of benefits will eliminate the current "cliff effect" that many people experience when they leave the Social Security rolls and simultaneously lose health insurance, long-term services (including personal assistance services), housing subsidies and food stamps. Such de-linking should not apply to the eligibility for Medicaid/Medicare that usually accompanies SSI/SSDI eligibility.

c) flexibility in the system so that people can be supported during intermittent periods when their disability may temporarily limit their ability to work;

d) health insurance coverage (including some long-term services) for individuals with disabilities who work or who return to work but who cannot obtain or afford health coverage;

e) supports and services, including housing, personal assistance services, assistive technology and vocational rehabilitation, that are necessary to ensure independent living and self-determination;

f) an accommodation fund that would pay for individual accommodations for Social Security beneficiaries that are beyond the reasonable accommodations required by ADA and that would enable these beneficiaries to leave the rolls and work.

g) service and support brokers to facilitate the attaining and maintaining of employment by individuals with disabilities who are capable of working;

A broker is a service coordinator whose job is to support the economic security and return-to-work efforts of people with disabilities. Brokers routinely provide information on employment options and supports to people with disabilities. These brokers could be private agencies run by people with disabilities;

h) maintenance of some cash support and full health insurance for those whose disabilities are so significant that they will not be able to support themselves by full-time employment.

This economic security package is intended to support independence and employment. Because many people leaving the Social Security rolls often take minimum-wage jobs, their income from working is not sufficient to cover basic living expenses, in particular disability-related expenses that are covered by public health insurance. The Disabled Worker Tax Credit (which could function in a manner similar to the Earned Income Tax Credit), the Personal Assistance Services Tax Credit, and the continuation of health insurance are intended to ensure that working is economically more advantageous than cash benefits. Access to long-term support services based on need, not eligibility for cash assistance, is also intended to support employment and independence. The accommodation fund is intended to fund technological accommodations, such as expensive computer systems and lifts or hand controls on vehicles, that will enable employment. The use of a broker to support people with disabilities in their efforts to maximize independence and employment may take many forms. One possibility is to issue "tickets" to beneficiaries who may deposit their tickets with the broker of their choice, who, in turn, will be paid by Social Security or another funding source to assist the individual in finding and keeping a job.

Employment Retention

3) The Commissioner of Social Security, the Secretary of Labor, the Secretary of Education and the chairman of PCEPD should work with state and local governments, employers, organized labor and the disability community to initiate policies and programs and, if necessary, legislation amending programs such as workers' compensation to ensure prompt comprehensive intervention for workers who become injured or disabled while they are employed, with the goal of returning workers as quickly as possible to the workforce.

Most people with disabilities become disabled during their working years. The point at which a person becomes disabled is the point at which he or she is most vulnerable to long-term separation from employment. Too often workers' compensation systems, long-term private disability insurance and Social Security promote that separation rather than a return to work. Early intervention at the onset of disability can serve to prevent entry onto the long-term insurance rolls, including Social Security, and retain people in the workforce in a productive capacity as long as possible.

Tax Incentives for Employers

4) Congress should develop tax incentives for employers who hire people with disabilities who have been receiving SSI or SSDI for more than two years.

Health Insurance and Health Care

We have learned that our system of health care is not really committed to the concept of family, and further, is not really committed to the concept of health care for all. This system, instead, offers health care to some people, in some places, for some diagnoses, in some age groups, some of the time.

Abioses and Molly Cole, parents ofMariyama, a child with a disabilityTestimony before the National Council on DisabilityHartford, ConnecticutJune 17, 1991

I am prepared to die for my country, but not for my insurance company.